The Superheart Endowment Fund

Helping Child Heart Transplant Candidates and their Families Make Ends Meet While They Wait...

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Inspired by our successful fundraiser for a beautiful young girl while she and her family waited for her new, life-saving heart,  The Superheart™ Fund is poised to bless thousands of other kids and their families with your support.     

THIS IS HER STORY (some details have been modified to protect the family’s privacy).

Aspen is a living miracle. Fortunately, she was a born fighter with a loving family, friends, and support system because ALL of her doctors predicted she would not make it past infancy. Then her family was told she wouldn’t make it past 10. Here we are, twelve years later; Aspen is in 6th grade, studying hard, spirits high, sweeter than cherry pie, patiently and hopefully waiting for her new heart.

Dauntless, Faithful Optimist.

She is about as girly girl as they get, enjoying her Barbies, makeup and tea parties and keeping things proper, but she also loves spinning stories, watching TV, romping in the back yard, playing in the mud and puddles, and like anybody who is uncertain of exactly what the future holds, Aspen carries a little anxiety with her each day. She’s understandably scared of hurting after her eventual transplant surgerie(s). Playing with her brother and frequent visits with her sibling at the hospital and on the phone also help to keep her spirits high, but Aspen’s strong faith are the bedrock of her steadfastness and hope. Aspen has a strong faith and knows that God is in charge, loves to attend church on Sundays and Awana Family Night on Wednesdays. After she gets her new heart, Aspen is hoping to be on the worship team for the 4th and 5th graders.

As a tween, Aspen is looking forward to running, skipping, jumping, climbing, riding, swimming and just being a kid once her new heart is in place. Then there’s high school, dances and sports. homecoming and graduation. College is next, and Aspen already aspires to be like the wonderful people who have and continue to help and support her throughout this whole difficult ordeal; she plans to study hard and eventually become a nurse so that she can care for people like herself. We can only imagine what else Aspens dreams of over a long and healthy life with her new heart, but through it all, Aspen’s courage, determination and optimism carry her forward, confident they will find a compatible heart for her, confident she will live and long and healthy life so she can accomplish the goals she continues to set for herself and experience the fullness of life’s promises.

More about what heart transplant kids and families go through below.

Aspen lives life to the fullest with half a heart. As her mom, I can’t wait to see what she does with a whole heart.

The Waiting Game.

No beans about it, heart transplants are complicated, delicate, risky procedures. Kids on the waiting list are never sure when, or even “if,” they will ever receive a new heart. Surgeons have to deal with existing scar tissue and often do substantial reconstruction in order to connect the new heart with the patients’ anatomy. Parents often go on indefinite unpaid leave from work to be by their child’s side. It can be quite a juggling act for 2-parent families, let alone single-parent, sole breadwinner families.

Aspen’s siblings are now back in Tucson for the new school year; they stay with a dear friend during the week and with their Grandparents on the weekends. Being apart from each other has been tough on our little clan, but thankfully, through it all, friends and church family have all stepped up to help during this time. Occasionally, nearby friends will visit. Some offer to help with bills and child care. Prayers continue to pour in with words of encouragement. It all helps to keep our spirits up. We continue to make the most of each day; enjoying each opportunity to be a family together in the hospital.

Hospital Life.

Our routine at the Children’s Hospital is pretty set, every day’s common threads being Aspen’s medicine, nutrition, monitoring and vitals. Aspen’s oxygen levels are constantly monitored and adjusted as needed. Her weight, input and output are also monitored closely to maintain ideal weight and minimal fluid retention for the heart she’s living with right now.

Aspen wakes up at seven each morning and orders a hearty breakfast. Like most of us, she has her favorites but recently she’s met my challenge to try new things and has added pancakes and breakfast sandwiches to her customary favorites. Various teams of nurses, doctors and consultants come by to assess her condition and plan out her day. Prior to breakfast, Aspen takes an “appetizer” of about 10 different medications, antibiotics and stomach settlers with her apple juice. The medicine she receives continuously in her arm helps her heart beat stronger and opens up her blood vessels. But before she digs into breakfast, her respiratory therapist hooks up a device to her trach.  Aspen plugs her nose and mouth and takes deep breaths through her trach while the device creates extra pressure making it harder to exhale.  This helps keep her lungs open.  It takes her about five minutes to do and then she’s free to enjoy a movie during breakfast. She’s responding well to all of her medication and therapy, so the plan at this point is to “watch and wait.”

School Daze. After rounds each morning, Aspen’s school day begins. The assignments her school sends to the hospital keep her moving forward so she can stay en par with her classmates even though she’s is the hospital doing the work while they’re in the classroom. With her mom’s instruction and guidance, they work through the material together, at Aspens pace, a little each day – sometimes even on the weekends. Her favorite subjects are science and spelling and her least favorite is math homework. But she get’s a spoon full of sugar with math because each day at ten o’clock Aspen gets to FaceTime with her class for math – this is Aspens favorite part of her school day. On good days, school is out by noon, but that doesn’t mean the day is done.

Exercise is essential to keep Aspen strong, flexible and healthy, so after bathing and grooming we go on a ramble around the hospital unit. Walking not only strengthens her bones and muscles, but it also helps keep her lungs clear and free from infection. Her wheelchair, oxygen tank, IV pole and vitals monitor in tow, we set off on our adventure taking two laps around the unit, stopping frequently so Aspen can recover to catch her breath and take in more oxygen as her levels tend to drop whenever she exerts herself. Twice around is about the max, and we take a break after each lap, stopping along the way to play ‘I spy’.  We are running out of things to spy. Until recently we were able to go on our “rambles” twice each day, but since her condition has deteriorated a bit she is only able to tolerate once per day; any more than that and her weakened system cannot process the excess fluid, leaving her tired, cranky and swollen the following day. One can only imagine what that’s like.

By the time we finally return to the room and get settled in it’s time for mid-afternoon medicine and another breathing therapy session and treatment followed by lunch. After lunch, she has free time to play board games, enjoy coloring and drawing, dig in the sand, read and watch movies. During the week, the child life specialist comes around for a visit with the kids and a craft project to work on. Aspen loves crafting, especially when it involves painting, and her favorite project so far is a watermelon fan. Every Monday all the kids in the hospital get bingo cards if they want to play bingo on the tv. Pretty cool! Aspen loves bingo and has won four times so far.

Bath time follows lunch each day. My daughter’s instability and PICC line (a deep iv in her arm) make it impossible for her to take a regular shower or even a tub bath, so  Aspen’s mom gives her  a bed bath followed by a complete wipe down with antimicrobial wipes to reduce her chances of getting any type of infection. The PICC line leads straight to her heart so any germs that infiltrate this line could threaten her life. After the wipes, the nurse detaches Aspen’s PICC line so she can get dressed and change out the PICC line dressing. Then it’s Mom’s turn again to get Aspens beautifully long hair combed and pulled out of her face.  Finally, Mom changes her trach ties and use salt water wipes to clean around it daily. Once a week her whole trach needs to be changed out.  The whole bath routine takes about an hour.

Before we know it, it is time to order dinner and start winding down for the night. By this time Aspen is usually pretty worn out, so we take it easy and watch a movie with dinner. After dinner it’s time for another course of medicine, assessments by the night nurse, another breathing treatment and then on to the trach collar for the night. The trach collar provides Aspen with the humidity she is not able to get naturally due to her trach.  Thankfully nights are usually good for Aspen. Her body is able to relax and her oxygen level tends to go up, giving her the energy she needs to do this all again the next day. She usually falls asleep pretty quickly once the trach collar is on. After rounds with the night doctors I’m toast. Time for bed!

Heart transplant patient Aspen Reese and Family
Halloween – basically just clowning around!

Meet the Family.

Aspen wouldn’t have gotten this far without her family.  We all love her very much.  Although I am sad my girl (Chloe) is growing up, I am proud of the young lady she has become.  I am excited to see what God does in her life.  All three of the kids love to sing, dance, and swim! My kids are my super heroes.  Even though life has been tough, they have never let it bring them down.  They just keep on smiling and bringing light into the life of every one they meet.

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CHLOE: is really enjoying being in high school.  She also understands the gravity of Aspens heart problems and knows there is a big risk with transplant.  She chooses to look at the bright side.  She is looking forward to riding bikes and swimming with Aspen.  Chloe is also looking forward to Aspen finally getting her trach out and not needing oxygen anymore. Chloe is my oldest, she is 14.  Chloe is amazing; I honestly don’t know what I did to deserve her. Chloe has also been through so much in her short life, yet she too has an extremely sweet personality.  Chloe is always eager to help, and never complains when asked to help.  Chloe also has the ability to argue better than any lawyer.  This is fitting, since that is what she wants to be when she grows up.  Chloe excels at school, she is brilliant.  She also has a heart to serve little ones.  At church, Chloe volunteers in the 4 year old class room.  Her face lights up every time she see one of the kids she works with.  Chloe also loves mission trips to help little ones, she has been on two with our church.  In her free time, Chloe loves to read and draw.  She has a fascination with the Japanese style of animation.  Chloe is looking forward to starting high school this year.

AIDEN: does not understand the deeper aspects of Aspens heart problems.  He does understand that transplant will allow her to do things she has never been able to do.  Aiden is looking forward to playing tag and riding bikes with Aspen.  He is also looking forward to Aspen no longer needing her wheelchair. Aspen’s brother is Aiden.  He is nine.  Aiden has the tenderest heart I have ever met.  He asks about Aspen and how she is doing every time I talk to him. He is always eager to help and learn.  Although his choice occupation changes weekly, daily, even hourly; two things remain the same, he wants to be a gentle man and a God faring man when he grows up.  He is quickly on his way to both of those goals.  He is quick to open doors, hold the elevator, and allow others to go first.  He also thinks of his sisters, asking to buy things they may like.  Aiden also looks forward to going to church.  He loves AWANA family night where he learns verses and Sunday school where he learns lessons about God.  The many occupations he switches between include a scientist, construction worker, a soldier, archeologist, etc.  Aiden also loves to be a normal boy.  He loves playing with his action figures and sword fighting with the girls.  Whenever given the chance, he adores rough housing with the older boys.  Aiden has such a zeal for life; I can’t wait to see the man he becomes.

GALYN: As Aspens mom, I have all sorts of mixed feelings about transplant.  I understand that transplant is not a cure all. It took a lot of prayer before I made my decision.  As I prayed, God laid all the good possibilities on my heartAs I watched Aspen get sicker and sicker I realized I couldn’t stand by and do nothing.  We need to keep up the fight.  As for me….let’s see.  I am a respiratory therapist at Banner University Medical Center in Tucson.  I have been an RT for five years.  When I became a single mom, I needed a job that would support my family and allow me to see my kids.  I really enjoyed taking care of Aspen while she was on the vent (and yes, I still do enjoy taking care of her) and figured I could help kids and their families all at the same time.  The greatest day in my RT career is when I was trained in the PICU and got to take care of my first heart patient.  Outside of work I have a passion for theatre.  I actually have my bachelors in theatre design and technology.  I tried working in the theatre, but it took me away from the kids a lot.  A year and a half ago, God finally brought theatre back into my life.  I am able to design and program lights at Casas church in Tucson.  When I’m not working, taking care of the kids, or volunteering at church; I’m sleeping!  The hobbies I would like to do include hiking, reading, and scrapbooking.  Raising my kids is by far my favorite thing to do.  I am blessed that my job only takes me away from them three out of seven days.  I feel like I should include my outlook on life and an opinion on my personality.  But I don’t think it’s my place to do that.  It’s for others.  This is the biggest part of me, caring about others.  My outlook on life is that it is hard yet wonderful.  I am up to the challenge of overcoming it.  And with great family, friends, and God by my side, I will overcome.

Heart transplant patient Aspen Reese with her family at the beach.
Surf, sand, Galyn, Chloe, Aiden and Aspen.

THE TRANSPLANT: Even though things are stressful right now, we are all excited for Aspens transplant. Aspen will need lifelong monitoring and medicines.  On top of that there are other issues that could result from transplant; rejection, increased risk of cancer and infection, and kidney damage.  In addition to the possibility of lifelong issues, the surgery itself is risky.  This all sounds pretty bad.  Transplants have come so far over the last decade.  They have found ways to minimize the risks and many recipients go on to lead healthy normal lives.  Once Aspen gets her heart, there will be so many advantages.  For the first time in her life, she will have normal oxygen levels.  She will be pink!  Right now due to her heart defects, her skin has a blue hue to it.  Due to her normal oxygen levels, Aspen will be able to do so many things she has never been able to do.  Aspen has never been able to ride a bike.  She will after transplant.  She will also be able to walk up a flight of stairs, run, swim, participating in PE, go to the mountains, etc.  The advantages of getting a heart transplant far outweigh the risks.  Although it has been before and could be again, at this time not trying is not the option for us.

The Whole Story (in a nutshell).

PREGNANT WITH ASPEN: When I was six months pregnant with Aspen, I found out that she had several severe congenital heart defects. She was going to be born with her left ventricle being too small (hypoplastic left heart), a giant whole between her two ventricles (single ventricle), missing a valve (tricuspid atresia), a narrowed aorta (aortic stenosis), her aorta and pulmonary artery coming off the same spot (trunctous arteriousa), her superior vena cava on the wrong side (heterotaxy), and her veins coming back from the lungs didn’t connect to her heart right (total anamolus pulmonous venious return).  Along with all of these heart defects, Aspens heterotaxy affected other areas of her body as well. Her stomach is on the wrong side, she has no spleen, the liver is centered, and her intestines were all on one side. PROGNOSIS: Without surgical intervention, Aspen would have survived only a short time after birth. We were assured that a series of three surgeries would correct all of Aspens heart defects; it wouldn’t cure her, just make her anatomy work. DIFFICULTIES (WEEK 1): Aspen had a ventricular brain bleed during her first week of life.  The extent of this wouldn’t be known until she was older. Following the bleed, Aspen continued to have problems. The day she was supposed to go to surgery for her first heart surgery, Aspen crashed. Her blood went acidotic and her organs began shutting down. She was placed on a ventilator and became totally unresponsive. A CT scan showed that Aspen had suffered a mild to moderate brain bleed during her crash. DIFFICULTIES (WEEK 2): For the entire second week of Aspens life, she was a complete vegetable. The doctors repeatedly told us that Aspen would never recover and that it would be cruel to put her through heart surgeries and keep her alive, so we prayed and made the decision to withdraw life support. ASPEN DIES: That night Aspen died in my arms four times. ASPEN RETURNS TO LIFE: We witnessed four miracles that night; four times God brought her back unassisted and the next morning she stabilized, opened her eyes, and started behaving as a normal baby. ASPEN GOES TO HOSPICE: Still unsure of what to do next, we took Aspen to Tucson on hospice. FIRST SURGERY: Before we left, the heart surgeon was the first to reverse his opinion on Aspen. He felt that he could get Aspen through the first heart surgery with minimal chance of additional insult to her brain. After two weeks at Nanas, Aspen continued to improve so we decided to proceed with surgery and called the surgeon. The very next day, Aspen sailed through her first heart surgery. HOME FOR THE FIRST TIME: Two weeks later we took Aspen home to Flagstaff for the very first time. SECOND SURGERY: At five months old, Aspen had her second heart surgery, responding so well she was able to leave the hospital after only five days. TWO YEAR MARK: Over the next couple of years Aspen was late hitting her developmental milestones, but continued to thrive regardless! At two years old, she was scheduled for a final surgery to complete the repairs to Aspens heart, allowing her to lead a normal life, but things did not go as planned. Her body just wasn’t ready for the surgery and she struggled for a year, undergoing multiple surgeries to try and repair the repair. Even with all the interventions, Aspen was steadily getting worse with each passing week.  Her heart started to fail and she was put on full-time oxygen. To make matters worse, she was throwing up multiple times a day and had no energy. The doctors had little hope for her, and repeatedly told me she was dying.

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THE PATH TOWARDS A NEW HEART: Seeing no other option, we brought Aspen into the hospital to find out about getting in line for a new heart. The heart surgeon at University Medical Center decided that she was not yet a candidate for transplant, but her heart surgeon at Phoenix Children’s Hospital presented us with some hopeful options. Several more surgeries were attempted to try and fix the problem without success. As we watched Aspens life slip away yet again, a last ditch effort was made.  The heart surgeon took Aspen back to surgery, this time taking down the Fontan.  We were not sure if we would see Aspen alive again.  God worked through the surgeons hands and Aspen sailed through the surgery.  She immediately started to improve.  Even though Aspen was improving, we still had a few hurdles to jump over before we could head home.  Aspens lungs had been beat up, her vocal cords and half her diaphragm was paralyzed, and she wasn’t eating.  After much prayer and several failed attempt at getting the breathing tube out, we decided to trach Aspen and tack the paralyzed side of her diaphragm down. HOME AGAIN: After being hospitalized for over two months, we again were able to take Aspen home. Life at home was a new challenge.  We had to adjust not only to a trach, vent, feeding tube, and oxygen; we also had a new baby.   With each passing day, things got easier and easier and Aspen got stronger and stronger. ASPEN SPEAKS: It was unclear whether Aspen would ever talk again.  One day Aspens trach got plugged with mucus, and Aspen started talking!  We were elated!  Sadly we couldn’t leave her trach plugged, and after clearing it she was unable to talk.  But we knew she was able to, it would only be a matter of time. FAMILY DYNAMICS: Four months after Aspen was released, our family went through a tough time.  Their dad was arrested; while he was incarcerated we divorced, leaving me a single mom of three.  BACK TO HOSPITAL: A month after his arrest Aspen was again hospitalized.  She was in for a month before they were able to stabilize her enough to come home.   Again we left with an unknown and disheartening prognosis.  The doctor said that Aspen would progressively get worse and there was nothing left to do besides to keep her comfortable. CARPE DIEM: After hearing this so many times, I was numb.  I had decided long ago to live each day to the fullest. Enjoy each day like it’s the last, yet keep things as normal as possible.  Once home Aspen started improving again. GETTING BETTER: After a year, we were able to get Aspen off of the ventilator and the feeding tube.  We were unable to remove the trach, but it doesn’t slow her down. Nine (9) YEARS LATER: It has been nine years since Aspen had her fontan taken down.  The doctors have said all along, that it would be a miracle if Aspen made it to her ten year birthday.  BEATING THE ODDS:: She is now 12.  After the fontan was taken down we were also told that one day Aspen would slowly outgrow her heart and her circulation.  Once that day came, there would be only two options, let things progress or get a heart transplant.  THE TWEEN YEARS: Sure enough, once Aspen hit her growth spurts her health started deteriorating again.  I prayed, talked to Aspen, and decided to keep up the fight and list her for a transplant.  At the end of June Aspens health had deteriorated so much that she needed to be hospitalized in Phoenix and placed on Milranone where she is now.  This medicine helps her hear beat stronger and opens up her blood vessels to help the blood circulate easier.

And now we wait…  We are a close family, and being apart has made it tough on us all. School is back in session for Chloe and Aiden in Tucson, so I’ll be waiting here with Aspen in Phoenix, travelling back and forth on the weekends whenever possible.  Thankfully my friends and church family at Casas have all stepped up to help during this time.  We have had multiple visits from Tucson friends, offers of help with Aiden and Chloe, continuous prayers, and constant words of encouragement.  Through it all, we remain in pretty good spirits and continue to make the most of each day; enjoying each opportunity to be a family together in the hospital.

Making Ends Meet.

As I said earlier, I (Galyn Reese) am the sole provider for my family.  Aspen gets SSI, but it only covers some of the bills.  Ever since Aspen has been hospitalized, I have been sitting by her bedside.  The FMLA (Family Medical Leave Act)  is keeping me from losing my job, but it is unpaid.  Due to the nature of Aspen’s illness, I have never been able to save up any PTO (paid time off) because I use it throughout the year whenever Aspen gets sick.  We have no income, yet the bills keep coming.   My monthly bills including rent are just over $2000 a month.  While in Phoenix I have additional costs associated with being at the hospital, included travel expenses, food from the cafeteria three times a day, maintenance of our Oro Valley residence and on-going bills and all the other costs associated with living and raising three kids. You can imagine!

Aspen-inspired Superheart” Endowment Fund.

I realize that we’re not the only people in the world waiting for hearts and other organs, and that’s why we’re establishing the “Superheart Endowment Fund” in cooperation with Catalyst to establish a perpetual fund that can benefit people like my Aspen long into the future, even after we are back on sound financial footing and Aspen is living with her new heart.

Thanks for your support! – Galyn

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- September 11, 2016

Hello everyone!

I know you are all anxiously awaiting the results of Aspens tests. Everything looks good! No fluid around her lungs, all her blood levels looked good, and her blood sugar was 105(With insulin given last night). One of her rejection meds levels is still low, so they had me up her dose. I'm so thankful for the transplant team watching her so closely. Even though our ER visit was less than ideal(next time, I will bring her meds), the end results are good. And I would also like to point out that although it did take a loooonnngggg time, the hospital staff did a great job keeping Aspen safe from germs. They took us back to a positive pressure room(isolation room) right away and put her on protective precautions. Everyone who entered the room had a mask on. And yes, Aspen did too(before we walked in the ER doors). And even though I was literally hitting the call light every 15 minutes to check the status of things, they understood completely and never gave me grief. After leaving the ER, I realized today was a test of patience day. We went to 5 & Diner for breakfast/lunch. We sat on the patio and I went inside to let them know we were out there. The host brought out menus and went back inside. Well.....30 min went by and no one came to see us. So I went back inside and let the hostess know. She talked to the servers and let me know who our server would be....15 min later still no one. I was tempted to leave, yet thought the manager might want to know this was happening. So I went in and asked for a manager. After explaining what happened and why we couldn't sit inside, she promptly went outside with me and started serving us personally, apologizing feaverantly. Our server took over, promptly took out order, and brought us lots of water. The rest of our meal was great. I never had an empty glass and we were checked on every 5-10 min. When done, our server again apologized for what happened, never giving excuses, and letting know that our whole meal had been taken care of. He wouldn't even take a tip. I was blown away, and very grateful I had held my tongue. I was all set to hop on Facebook and give a scathing review, when a small voice said...'grace, give them grace like I gave you'. So I did and look what came if it. I can now sing this restaurants praises. Mistakes happen, in my opinion it's how you handle the mistake once it's done. 5 & Diner still has good customer service and went above and beyond to fix their mistake. After lunch we hung out at RMH enjoying each others company, doing laundry, and continuing the cleaning/sorting duties. I got the privilege of blackmailing my teenage daughter into taking a picture with the Ronald McDonald statue(she left her phone in the car and wanted it). Then my good friend Anabel and her friend George came from Tucson to pick up Aiden and Chloe for their return trip. Back to a family that has opened their hearts and home to my kiddos, making their own sacrifices. As always, it was a tearful good bye. But hopefully the Sunday goodbyes are coming to an end! Home either next weekend or the weekend after, if all continues to go well. Aspen and I went and picked up Chinese for dinner, and I failed my third test of patience. The RMH usually has someone come in and cook for the families. We checked the family room before heading out at 5 for Chinese to see if there was a dinner tonight. Well, when Aspen and I went in at 7 to put our leftovers away, there was a joyful group of people serving up a wonderful home cooked meal! Yeah, I'm waiting until 6/6:30 tomorrow before heading out for food. So 1/3 is better than 0/3 I guess. I'm hoping to improve upon that next time. I got to end my night cuddling up with my miracle child while talking to my boy over the phone. My mommy heart is happy and content. Right where it should be, thank you Jesus for my countless blessings.

- September 11, 2016

Two hours in the ER for routine labs and an x-Ray.....when they were expecting us. daughters medicines are now an hour late. Seriously people!

- September 10, 2016

We had a very mellow day together today. I unloaded everything that we had at the hospital from the car and started wiping it down with Clorox wipes(due to Aspens suppressed immune system). So hopefully the kids will have stuff to do soon. Im also hoping to sort through everything and thin out what we bring back to Tucson. Our room at RMH is very basic. Kinda like a super 8 motel with free wi-fi! Two queen Beds and our own bathroom. We are responsible for making our own beds and cleaning the place when we leave. There is NO food or drinks allowed in the rooms, only water. They have a kitchen and dining area where we can cook and keep our own food. They usually have dinner brought in or catered. Tonight was cold nacho cheese and chips....I opted to get Wendy's instead. Our RMH seems less homey than others I've heard about. The one at the hospital has volunteers cook a meal every night. Ours may be lacking due to construction. The 'main house' is being remodeled. That's where the kitchen, dining room, and play room usually are. Oh well, I can't complain; it's a decent, clean, and free place to stay TOGETHER! We left for breakfast at a restaurant called scramble. They had an outdoor patio, so we dined there as a family!!!!! Then we came back and explored the RMH. The grounds are pretty nice, statues scattered throughout. They even have one of Poe from King fu Panda. There is also a bench with a Ronald McDonald statue. I'm going to get a pic of the kids there tomorrow. They even have a resident cat wandering around. The kids and I found it this afternoon. It is very calming to pet a cat. We watched a movie together tonight. We were going to play the wii(brought from home), but Chloe had a headache. I didn't mind cuddling my kids. Aspen seems to be ok. Her drainage has pretty much stopped. We will see if it's collecting inside via an x-Ray in the morning. All her vitals are good and her blood sugars seem to be settling down. They are still a little higher than normal, but not horribly so and fairly steady. I feel like something isn't quite right though. She's got dark circles under her eyes and seems to be pretty pale. And she doesn't have the same spunk she did before the cath/when they removed her line yesterday. I guess I'll find out tomorrow and Monday. The docs want to check the medicine levels in her blood tomorrow. They also agreed to get a chest x-Ray to make sure there isn't fluid around Aspens lungs. Aspens routine went smoothly again today. There are a lot more meds now, but it's goes so smoothly. So there ya have it. A blessed day one at RMH.

- September 9, 2016

I will NEVER get tired of looking at that pink smile!

UPDATE: We are out!

UPDATE: As I lay down in bed for the night, I'm content. All my babes are under the same roof again🙌🏼. Yet I also have the feeling that I'm forgetting something. Something important with Aspen. But I can't think of what it could be. I gave her ALL of her meds(including an insulin shot), checked her blood sugar again before bed, checked her dressing on her chest, and even got her mist collar on. I feel like everything went too smoothly.

- September 8, 2016

Congratulations to all of you who have stayed up awaiting the news! You will hear it first and be able to claim bragging rights! I would have posted sooner, but I had to learn how to give Aspen insulin shots(😢). So here it is...drum roll please! No seriously, pat on your legs!...........Aspens biopsy came back with ZERO rejection! Woot woot! So her body is oblivious to the foreign tissue that is now residing in Aspens chest. I'm praying God continues to hide Aspens Olympic heart from her bodies natural defenses for the rest of Aspens sweet life. But there is always a chance that one day Aspen will have some form of rejection, most people do. But the team will be ready to combat it when that day comes. I'll explain rejection more in detail another night(and maybe only on the Super Heart be sure to go and "like" it). So with the important announcement out of the way.....Aspen had a 50% good day. We started the day talking to Dr. Zangwell about Aspens cath. He didn't see anything too concerning. Her ventricles are still sluggish/stiff. But he is still completely confident that they will recover. This is very common in transplanted hearts. He isn't completely sold on how her new heart was connected to her anatomy. At one point the blood vessel makes a sharp turn. It had to be done this way since Aspen has an important blood vessel come off at a weird spot. Right now the blood flows smoothly through this area. If that ever changes, he will worry about Aspen developing a blood clot. So someday in the future, they may need to go in and redo that connection. But I'm not going to worry about that now. Currently she is still good. Shortly after a good sized breakfast, Aspen got a really bad headache. Like it was so bad she was crying. The docs were even concerned. As they slowly increase her anti rejection med to a therapeutic level, they have to watch for a thing called 'press'. Very rarely, the anti-rejection med can cause inflammation/swelling in the brain and this can lead to seizures. If this happens, they have to switch meds until the kiddo is older. So please join me in prayer that this doesn't happen. I think her headache today was just a headache. She would get headaches from time to time before transplant, especially when the weather would change. And we did just have the remnants of a hurricane pass through. Aspen slept her headache away(again typical of how she behaves with pre-transplant headaches). And in the meantime my mom, the home care nurse, and I did our transplant training. This needed to be done before we can leave. Afterwards I was able to leave and have lunch with two wonderful friends from Tucson. It always lifts my spirits to see faces from home. Once back at the hospital, it was time to head to the pharmacy. I am now the proud possessor of a cars worth of medication. Let me tell you now.... I am thanking God for insurance. Now I see how transplants can run even a very wealthy person into bankruptcy. And for those of you wishing you could do more to already are. Aspen has state funded insurance, so be reassured that part of your tax dollars go to helping Aspen and other kids like her. Thank you. So, back to Aspen.....she has a ton of medicines right now. Like 15 different medicines twice/three times a day. As time goes on, they will wean her off most of these. Eventually she will only have around three life long medications. How quickly this happens will be based on how Aspens recovery goes. By six months out we should be able to start cutting back on those. When I got back, Aspen was ready to go for another walk. She is doing so good! Her only complaint is that her ankles hurt. This should resolve as she rebuilds her muscles. It amazes me that Aspen can now walk around the unit twice without stopping or getting short of breath. I really am excited to what new doors are opened to her now. The rest of the evening was filled with preparations for tomorrow. We are still on track to be discharged to the Ronald McDonald house. We will be there for a week or two. They want us to stay close since they need to see Aspen twice a week. If Aspen continues to do so well, we may be able to go home to Tucson after just a week! After learning how to give Aspen her insulin shots tonight(we are currently stuck with the insulin shots until they wean her off steroids) I feel confident taking Aspen "home". Aiden and Chloe are very excited to join us this weekend and be able to stay with us. It will be the first time in 110 days that we have all slept under the same roof. IM SO EXCITED! Thank you Jesus for getting us here!

- September 7, 2016

They just took Aspen back to the cath lab. It should only take about an hour.

UPDATE: She's back! I'll update in a few, she's getting an echo right now.

UPDATE: I was tired until the fire alarm went off, security went by with a fire extinguisher, and now a fire truck pulled up. Well, I've always wanted to climb the ladder on a ladder truck....ok....the alarm is off now. And there are no nurses evacuating patients....I think we are good. That was exciting!

UPDATE: Good evening everyone! One of these days I will start typing updates at a decent hour, when you are all awake. But today is not that day! Today was an I don't want to move, but have so much to do day. Aspens catch went fairly smoothly. The cardiologist had a tricky time getting his catheters where he needed them. Thanks to Aspens crazy plumbing,ms he has some interesting connections where her anatomy meets the donor heart. It may look funny, but it works. So the cath showed that Aspens right ventricle is still not pumping as well as it should be. It's still a little sluggish. I will ask Dr. Zangwell how long it can take for the heart to recover...if it ever will. It also showed that the pressures in the right ventricle are higher than they should be. This will be watched and could possibly be corrected with meds. I was also shown how Aspens pulmonary arteries are narrowed. Mother good news is that they open up as they get closer to the lung. The cardiologist will try and balloon them during Aspens next cath. He didn't want to try it today, since it could have popped her new connections open. So other than that, everything else looks good. Although not resolved today, Dr. Zangwell refuses to believe that Aspen is now a diabetic. He is weaning her steroids as fas as he can with the hopes that Aspens blood sugars will normalize. Until then, she is on a long acting insulin that will hopefully limit shots to once a day. After the cath, Aspen had a relaxed day....mainly since she had to lay still and almost flat for four hours. And I needed a chill day too. So Aspen spent most of the day watching TV. we did manage to squeeze in two walks and a visit with PT, man they really are working her hard....yet not too hard. She is still making great strides in her recovery. And she now has a better attitude towards it all. What more could this mama ask for.....HOME! I'll find out if we are still on track with discharge to the Ronald McDonald house on FRIDAY! I met with the pharmacist today and learned about all of Aspens meds, and they are at the pharmacy waiting for me to pick them up. Tomorrow we start training with the nurse practitioner(my mom, the homecare nurse, and me). I'm so excited, it's almost surreal. All right, I think I covered most of everything. I'm tired and will add on tomorrow if necessary.

- September 6, 2016

Hi guys!

I am actually going to do things backwards tonight. I need some prayers lifted up for Aspen. Don't panic, nothing super big, but super important. First and foremost, Aspen has her first post transplant heart cath tomorrow morning at 7:30 am. This is a baby procedure compared to her transplant. For those of you who don't know, during a heart cath they put a couple of catheters into Aspen blood vessels and run them to her heart. These catheters can do many things. First it injects dye and her heart shows up on x-ray. The docs can see how her blood is circulating. These catheters can also check pressers in the blood vessels, take measurements, and allow small procedures all with being minimally invasive. The hardest part of this procedure is having to lay flat for six hours afterwards, to prevent majot bleeding(since they use big blood vessels). Tomorrow they will be checking for rejection and making sure her right ventricle is recovering. So please pray that everything goes smoothly and checks out ok. We wont get the biopsy results (rejection test) until Thursday. Aspen is of course worried, she is not a big fan of going under anesthesia. I will not be able to go down with her for this one, they made an exception for the transplant. Thankfully they will allow child life to go. And Aspen has a really good connection with her. The second prayer is that Aspens blood sugar levels stabilize. Right now it's almost like Aspen has transplant induced diabetes(not really a thing). After transplant, it is normal for the body to release a ton of glucose(sugar) as a defense mechanism. Aspens blood sugar was +400. They gave her a insulin drip until her body settled down. Well, it hasn't settled down yet. Aspen is also on steroids, and these are known to drive blood sugars up. Aspen doesn't need to be on steroids long term, so hopefully as they wean the steroids, they will be able to wean the insulin. But there is a slight chance they won't be able to. The cardiologist said 'I really hope she doesn't have diabetes now'. Please pray that this is only temporary and that Aspen will no longer need insulin once she gets rid of the steroids. Or even pray more specifically with me that the problem will be resolved when she wakes up from her heart cath. I know I could tackle diabetes, but it would be much better for everyone, Aspen above all,if I didn't have to.

Now that the messy business is over, back to the fun stuff. Aspen is progressively having better and better days. Yesterday, she was still pretty weepy, but not as bad as Sunday. As you could tell from the pics, it's time to get serious and get Aspen better. Physical therapy swung by yesterday morning to get Aspen out of bed and really moving. She was able to get up and change the days here card by herself. Then we took her for a walk around the unit with brother and sister in tow. Aspen did really well, especially without the chest tube. Aspens reward was a trip to the playroom. Aspen has been wanting to do this since we were first admitted. But due to her milranone, she wasn't able to go(and it turns out, she still isnt....oops). So after her walk, we moved PT into the playroom. Aspen was still avoiding using her left hand, but would use it with encouragement. So the PT had her split a deck of Sorry cards one by one alternating hands. It was really a challenge for her, but she enjoyed it. Playing Sorry with Aiden and Chloe was exactly what Aspen (and Chloe and Aiden....and I) needed. We all had so much fun, and were cracking up as Aspen kept swiping everyone else's pieces as they passed in front of her. So many giggles, it made my mama heart happy. After the game, it was time for lunch. Aspen still wasn't eating much and was really uncomfortable after her few bites. So that mixed with being exhausted had her asking for a nap(which she NEVER does). So we decided no more pushing and let her sleep. So I visited with friends (we had TONS of visitors over the weekend....thank you to everyone who came and saw us) and let Chloe, Aiden, and their friend play BINGO(Aspen was sleeping soundly). After Bingo it was time to send Aiden and Chloe back to Tucson. Aspen was again the weepy one. She misses them so much (as do I). Aiden broke down once he was back in Tucson, man did it break my heart to try and console him over the phone. After her nap, Aspen was a totally different kid. She started using her left hand more, was moving better, soared through another walk, and ate a pretty decent dinner. I ended yesterday being very excited for today, I felt like Aspen had finally turned the corner and was actually starting to 'feel' better. And today I was not disappointed. Aspen woke up in a much better mood today, and even carried it througout the whole day. OK, wait. She was sad at first, but it was a normal sad. She was homesick. She told Dr. Zangwell that she just wanted to go home. He was very sweet with her and assured her that he was trying to get her there as fast as he can. He told me that it is actually reassuring that she is asking to go home. Home....home is being mentioned a lot recently. I'm almost in disbelief. There is a good chance that we will be discharged to the Ronald McDonald house by the end of the week/Monday and could possibly return to Tucson the following week if all goes well. WAIT WHAT!?!? HOME HOME IN TWO WEEKS!!!AHHHHH! YOU GO JESUS! But I still have a lot to learn before then. I have to know what all her new medicines are, what dose Aspen gets, and what the side effects are. I will also need to know how to give insulin, check blood sugar, and know the signs of a high/low blood glucose level. It's a lot, but I'm ready! "School" starts tomorrow. I already have my text book. After rounds, I was able to take Aspen to the bathroom for an actual shower. She's gotten bed baths since we were admitted, so this was great for her. Afterwards we had PT where Aspen learned different exercises for her legs. Then we walked three laps with her before coming back for a rest. After PT, I was tired. So I left Aspen with her DS and ran out for coffee. When I returned, the psychologist was there. So I got kicked out, that way Aspen could talk freely. I will find out the results of that chat hopefully tomorrow. Then it was time for PT again (see, we are super busy). This time Aspen got to play connect four. But she had to bend down to get the game pieces. She also had to turn to get them as well. Super good for her, yet super tiring right now. After all this, Aspen needed a break. So she and i played Clue. I love that game! Once rested Aspen was ready for another walk. So walk we did. This time I wanted to see what would happen if we tried turning off Aspens oxygen....well guess who is officially on room air! WOW! No more oxygen and no more milranone! Two things that were keeping her alive the last three months(yup, I cried a bit...then did a happy dance). SO Aspen no longer has any attachments while she walks. None. They are allowing her to walk without her literally nothing while she walks....AMAZING! After this amazing feat, it was time for Aspen to meet with the social worker. Again I was kicked out. She found out some of Aspens favorite things to do, and "ordered" her to do at least one of those things every day. Since Aspen needs to take care of Aspen too. I love the transplant social worker, she is amazing. After the meeting, Aspen got some dinner and I did too. This is the biggest change...she ate ALL of her dinner. After dinner we did one final walk and then crash landed in her bed (controlled of course). So yea, a pretty great day. I was all smiles all day long. Thank you God for a good day! Bring on tomorrow!

- September 5, 2016

Photo update of today....I will give a more detailed update in the morning. Things are getting busy around here, so my updates may spread out a little more. Try not to panic, I will post if things go south. Less posts means great things are happening. I apologize for any withdrawals symptoms you may experience, I will try and gradually space out my updates🙃. I've got a lot to learn before we can go.....HOME!

This is the first time Aspen has been able to change her day count herself. And I do believe she had a smile on her face.

Aspen was actually doing some PT here. Splitting the cards into two equal piles was actually kinda tough for her.

Aspen has missed her siblings....I think the feelings are mutual.

- September 4, 2016

Update soon! Things have been busy. Here is a pic to tide you all over...

UPDATE: Hello everyone!

My heart is full and happy, yet I am physically and mentally exhausted. Yesterday was day three, and day three is always tough. Although Aspens picture shows her smiling, they are not the majority. Each smile takes lots of work to earn. The norm right now is lots of frowns. Although they are becoming more numerous. This new heart thing is a lot of hard work. Aspen has had a busy couple of days. Both yesterday and today were days of progress. First thing yesterday morning, Aspen got two of her IV/lines taken out. Then it was time for work Aspen had to get out of bed. She was so weak and sore. It tool a lot for her to get up and get in the chair. But the most improtant thing Aspen can do in her recovery, is to get up and move. Her x-ray yesterday showed that some of her left lung was closed up due to not being used. So nursing and respiratory had a joint get that lung open again. Respiratory has been coming in four times to do a breathing treatment that opens Aspens lungs and the nurses got her up and moving, she was in the chair a bit, before being allowed to move back to the bed. Once there she promptly fell back asleep. Asoen also had a lot of visitors yesterday. It being her first day awake, Aspen wasn't very social, and actually dozed most of the day away. She did enjoy the visitors though, Aspen got upset every time someone left. Needless to say, it was an early night. Aspen fell asleep right before we had visitors from Tucson. That's ok, I got to visit instead. Today was another busy day and Aspen was emotional all day. We started with Aspen going on her first walk. PT came by to gelp with her first time out, Aspen only made it half way around, then we decided to take the "D-A-N-G-E-R...shortcut(NAME THAT MOVIE!) ...which cracked her up. She was getting really sore and tired. After taking a rest, Aspens chest tube came out! Getting the chest tube out is a big step. Aspen has always improved after getting her chest tubes, man do they hurt when they are in. Once getting it out, Aspen took a much earned nap..Once naptime was over, it was lunch and go time. Aspen went on another walk, which was much better than the first. She was still pretty wobbly, yet was much better than this morning. She continues to get stronger each time she gets up.By the end of the day, Aspen was wiped out. Hopefully she will sleep straight through and will be a whole new kid tomorrow. I'm so thrilled with how well Aspen is doing. Her first cath and biopsy is on Wednesday. Please pray all goes well, that they don't find anything unexpected, and that there is no rejection. Again Im sorry for the lack of emotion in this post, seeing my girl in pain and struggling hurts my heart. Yet I continue to be amazed and grateful for this chance. Bring on tomorrow!

- September 3, 2016

Aspen says 'hi!'

- September 3, 2016

Look who is awake! Our first conversation this morning:
Me: what's wrong? Are you scared?
Me: What are you scared of?
Aspen: Transplant
Me: Honey, it's done!
Aspen: I'm scared they forgot to do it.
Me: Oh they didn't forget. You are pink! Your new heart is beating in your chest. Guess what your sats are?
Me: Yup! Wanna see?
I proceed to take a picture of her monitor and show her.

Overall Aspen is doing wonderful! We have reached the point where she is quickly coming of of everything. After much deliberation and confused discussion, they decided to put the same size trach back in, the ENT didn't think he would be able to get anything bigger in. He actually thought her stoma would be closed up and nothing would go in. So we(yes we. My RT side kicked in. I was bedside helping extubate my own kid) started by pulling her ET tube back until it cleared her stoma. Then the ENT slid her trach back in without a problem. So they pulled the ET tube and hooked her trach up to the vent. Well that wasn't working so well. Aspen complained of not being able to breathe and all the air from the vent was going out her mouth(path of least resistance). So plan C: take her off the vent and put her back on the mist collar. Once that was done, Aspen was breathing easy and drifted back off to sleep. This morning she is sore. It's hard for her to cough, since it hurts her chest. But if encouraged, she will do it. So proud of her! Today is a day of taking leaps and bounds forward. They already have plans to take two of her lines out. Her arterial and IJ lines. Then she will only have one line, and that one stays until discharge. Respiratory is here giving her breathing treatments to get her left lung open again. And the biggest things are to get her out of bed, eating, and drinking. So excited! Thank you God for this amazing gift of life.

- September 3, 2016

- September 2, 2016

Yesterdays humor:

Me- Aspen has so many people storming the gates of Heaven with prayer that God is like "Ok, I heard you! So many people stormed the gates of Heaven that now we have to rebuild them."

Carrie McLean- Good thing they have a carpenter

Aspen continues to do well. She opened her eyes a few times yesterday. She nodded and shook her head, squeezed my finger, and wiggled around a bit. They don't want her awake right now for several reasons. Mainly, it would be cruel. Aspens chest is still open, so its painful and scary. The second reason is pain control and the third is for healing. She needs to relax right now so that her heart can recover and everything heal up. She had a good night last night. They had to give her insulin since her blood sugar level was 430. In big kids, this is a very typical response to heart surgery/transplant. It's one of the bodies coping mechanisms and should resolve after a few days. Her blood pressures are stabilizing, they were able to turn the vasoppressors off last night (these constrict the blood vessels, raising blood pressure). AND there are signs that her right ventricle is recovering. It's not 100%, but it is improving. AND her fluid balance is pretty good too. She does have extra fluid, but it's not so bad that she looks like a balloon. And she is tolerating the extra lasix they are giving her to get it off. My girl is so strong and is doing so good! Dr. Zangwell told me this morning that she is right on track with where she should be. We were even able to talk about the recovery timeline. HOME! WE TALKED ABOUT HOME! It's still a ways off, but we we finally able to talk about it. The plan for today is to close Aspens chest around . The bleeding has gone down significantly, so they are comfortable closing her chest. Once they do this, it resets the clock. What I mean by that is, the first 48 hours are the most critical time. Even though Aspen is doing so well, she is still sick. She is now over 24 hours post transplant, but once her chest is closed, the 48 hours starts over. When they close her chest, her hemodynamics will change. Both her heart and lungs will have less room and more pressure on them. This can be a good and bad thing. Please pray with me that her body will tolerate this change and everything goes will with the procedure. Once her chest is closed, Aspen can move forward with her recovery! She will be allowed to wake up and start moving around. The sooner she can get up and walking, the faster her recovery. I am just sitting her in awe over everything. I can totally see how God has had his hand in this the whole time. Ok maybe not with the three month long wait, but I'm sure I will as time goes on. As we get further out, I will be able to step back and see the bigger picture more clearly. Right now it looks like a bunch of weird and random dots. And someday God will show me how He uses each of those dots to create a beautiful picture. For now, i just rub Aspens hand and Thank God for what He has done, and pray wholeheartedly for the family grieving today. I am amazed and so thankful that they were able to say yes to saving other lives while they were loosing one. I am eternally grateful for them. Thank you all for your continued love, prayers, and support. I am totally overwhelmed with the love poured out on my family.

UPDATE: They just got started closing her up. It should take 30 min and the surgeon isn't expecting any complications. But you can pray....just in case 😉

- September 1, 2016


After waiting alllll day, things finally took off quickly. The nurse finally came in at 8:50 to let us know they were going to take Aspen down at 9:15. And they needed to give her an antibacterial wipe bath and change her gown. So I had to get those things done AND get...lets see like 10 people through hugs and see ya soons in 20 min. And my poor kiddo was so upset and so scared. It was a tough love we gotta get this done moment. Then anesthesia came in and let me know what would be going on. At this time Aspen was really getting scared. I quickly donned my bunny suite, hat, and mask before climbing into the bed and cuddling my girl. We prayed together as they gave Aspen some medicine to help her relax. It helped her relax, but not enough. She was telling me how scared she was all the way down to the or. With every bump and turn increasing her agitation. I could only hold her, assure her it was ok to be scared, and let her know everything would be ok. Once in the OR, they moved Aspen to the table while I stayed in the bed(kinda awkward) And held her hand. She got really agitated at one point and I realized they had given her the sleeping gas. She hates that part. I wish they had warned me. But it was too late, Aspen drifted off to sleep. I climbed off the bed, gave her one last kiss and told her I loved her before walking out with tears in my eyes, praying I'll get to see my girl again. I made it up to the room before breaking down in tears. Then the wait began. My first concern was her aorta. It lies right under the sternum, so something could have happened to it when they cracked her chest. But I got the report she was safely on bypass, so everything there must be ok. The next step is to get through all the scar tissue, cauterize all the extra blood vessels, and get her heart out. Then they can put her Olympic heart in and start reconnecting everything. The or nurse told me that it is a complex case and that it will be a long night. I know, believe me I know. I can rest now knowing that a machine is keeping my girl going. The next worry some part is getting the new heart beating and getting Aspen off bypass. So keep the prayers coming.

UPDATE: I just saw the transplant cardiologist. Everything is going well. They are sewing the new heart in😱🙌🏼😱🙌🏼 Its a little oversized, but he says that could be a good thing. They are on schedule. But the most crucial part is still to come. Restarting the heart, checking for good function, and getting Aspen off bypass. They are estimating being at five hours instead of the four they had hoped for. Which is really good for a complex rebuild. Go Aspen! Gods working miracles.

UPDATE: She's off bypass! Her new Olympic heart is working! The right ventricle is a little sluggish so they gave her some medicine to give it umph. They are not surprised and expect her new heart to recover. Now they watch for bleeding and get ready to close her up.

UPDATE: Waiting to see my girl...the longest part of surgery.

UPDATE: Aspen is doing 'better than good'. My girl is pink for the first time in almost forever! She looks amazing. Every problem Aspen is having right now is expected and normal in transplant patients. It is so amazing to hear that. We talked to the surgeon around five thirty and he said the transplant was a lot of work. But that everything turned out really well. All of the connections look good. She came back with an open chest due to the continued bleeding. It has a plastic sheet/gauze covering it. The bleeding has already slowed down and they are hoping to close her in a couple of days. Her trach is also temporarily out. They decided to pull it and intubate her normally for transplant. The trach will go back in when they extubate her. Hopefully her stoma won't close before then. So we will see. If it does, ENT will have to be involved. They are going to keep Aspen completely sedated for a couple of days to allow her body to adjust to her new heart/blood flow. It is so cool to be able to say right and left ventricle now. Aspen has a whole heart! How cool is that! So her left ventricle is good, but her right is still sluggish. Again, perfectly normal in transplants. They expect it to recover within a couple of days. Right now they are trying to manage her blood pressure, she needs more blood. She has already received her blood back(it's a really cool process) and they may give her more. They are also giving her medicine that constricts he blood vessels, increasing her blood pressure. As things progress they also expect her new heart to have arrythemias as it recovers and adjusts. She has a temporary pace maker to help with that if the need arises. So now it's a game of chase to keep all her vitals stable and get her long term medicines on board. The first 48 hours are critical and then that time will restart when they close her chest. When they close her, it will affect her hemodynamics since her heart won't have as much room. So all in all everything is going amazingly well. Thank you for all your prayers and support. Please keep praying, she's not out of the woods yet.

Here she is! Remember, her trach being gone is temporary. It will be back once they take out the breathing tube. BUT hopefully it will be gone in a couple of months permanently.

Aspens heart day door

New room decor, the nurses were busy while Aspen was getting her heart

There is a number on is 100. This is her oxygen level! I think I saw her at 100 for an hour once after her fontan. Otherwise that number has never been normal for Aspen

Check out all her meds!

Happy Momma!

UPDATE: Aspen is doing 'better than good'. My girl is pink for the first time in almost forever! She looks amazing. Every problem Aspen is having right now is expected and normal in transplant patients. It is so amazing to hear that. We talked to the surgeon around five thirty and he said the transplant was a lot of work. But that everything turned out really well. All of the connections look good. She came back with an open chest due to the continued bleeding. It has a plastic sheet/gauze covering it. The bleeding has already slowed down and they are hoping to close her in a couple of days. Her trach is also temporarily out. They decided to pull it and intubate her normally for transplant. The trach will go back in when they extubate her. Hopefully her stoma won't close before then. So we will see. If it does, ENT will have to be involved. They are going to keep Aspen completely sedated for a couple of days to allow her body to adjust to her new heart/blood flow. It is so cool to be able to say right and left ventricle now. Aspen has a whole heart! How cool is that! So her left ventricle is good, but her right is still sluggish. Again, perfectly normal in transplants. They expect it to recover within a couple of days. Right now they are trying to manage her blood pressure, she needs more blood. She has already received her blood back(it's a really cool process) and they may give her more. They are also giving her medicine that constricts he blood vessels, increasing her blood pressure. As things progress they also expect her new heart to have arrythemias as it recovers and adjusts. She has a temporary pace maker to help with that if the need arises. So now it's a game of chase to keep all her vitals stable and get her long term medicines on board. The first 48 hours are critical and then that time will restart when they close her chest. When they close her, it will affect her hemodynamics since her heart won't have as much room. So all in all everything is going amazingly well. Thank you for all your prayers and support. Please keep praying, she's not out of the woods yet.

UPDATE: Aspen opened her eyes when they turned her over just now. She spiked a fever, so they put a cooling blanket under her. A fever is normal after transplant, it's an inflammatory response. But they sent cultures of her lines any way, just to be safe. It was good to see her beautiful eyes. She even answered a couple questions and squeezed my hand. My heart is full!

UPDATE: Me- How is she doing
Nurse- she's doing really good
Me-can you say that again, I can not get over hearing that
Nurse- she's doing really good

UPDATE: Dr. Zangwell: 'She has a low CVP and a high(er) blood pressure, the combination of those two points to good cardiac output'.

UPDATE: I haven't been this happy since I held each of my kids when they were born. Aspens doing so well! Her chest closure went flawlessly. ALL her vitals improved with the closure. She is also warming up and getting more PINK color back. So they are stopping her Epi. Awe baby girl! Hurry and wake up, mamma wants to hold you! Next step....ENT will be by soon to put her trach in and get the breathing tube out of her mouth. Then it's time to wake her up! WOO HOO! Thank you Jesus!

UPDATE: After waiting for hours, things got moving quickly again. A few hours ago a bunch of
Docs stormed into Aspens room, scaring me out of my seat. There was a big jumbled discussion about pulling her et tube, putting her trach back in, which size to use, cuffed or uncuffed, need to do it soon so Aspen can start waking up, and we are going to wait for ENT. And then they were gone, it was like one of those mile high dust devils you see. They make a mess, ruffle your hair, yet really don't do much. Five hours later and one order for CPAP(breathing on her own with just a little help) later, the ENT will 'be here any minute' to put her trach back in. Aspen is drifting between being awake and asleep. She keeps waking up and crying because the tube hurts her then drifts back off to sleep. She will squeeze my hands and open her eyes if I ask. Hurry up people! 😁

UPDATE: Ahhhh....much better!

- August 31, 2016

Ok! More details as promised. I was enjoying a nice evening dinner and chat with my friend Anabel Teran when my phone rang. Sure enough, it was the transplant phone. I tried to keep my hopes subdued, just in case they were calling for something else. Nope! It was 'the call!'. She told me they had an offer and everything looks good with the heart. They were going to move Aspen to the CVICU, and wait for final acceptance from the surgeon. They won't have this until after they take Aspen back and prep her. I hung up the phone and immediately called my mom and Aspen. I didn't want Aspen to hear this wonderful news from anyone but me. Ideally I wanted to be with her, but since they were moving her, this wasn't possible. My poor kiddo started sobbing when she heard. She is so excited yet so scared! Who can blame her, I feel the same way. So I told her to cuddle up with Grandmother and that I would be there in two hours. After hanging up, I started alerting everyone and getting the prayers going. Then packed up the other kids and headed back to Phoenix. Once safely here, I helped my wonderful parents load up my van with all of Aspens stuff. Oh man, she has a lot of stuff. Then they took my dogs and kids back to their place. They will return in the morning. I came up and cuddled with my girl, talked about her fears (she doesn't like the sleepy medicine), and prayed with her. She is now comfortably asleep. Still scared, but ready to be brave and start a new chapter in her life. I'm going to try and rest. They will be taking Aspen back at 8:00 to get prepped for transplant! Please pray for Aspen, everyone involved, my family, and for the donor family. They chose to bring beauty out of their ashes. I can only imagine the pain they are feeling right now.

UPDATE: Quick update...we are still waiting for an official go time. Donor network is trying to get everything co-ordinated so that more people can be saved. They are guessing sometime this afternoon. Aspen is doing good, at the moment she is excited!

UPDATE: My worship pastor, kid city director, and creative worship director came up to sit with us and pray over Aspen this morning. It was so good to see them this morning! I love my church!

UPDATE: Don't forget that Aspen has her own page. Feel free to share this link with anybody! It's a public page and I post all of Aspens updates there too(but you all get the more personal stuff).

UPDATE: Pre transplant walk study

UPDATE: They are on their way to get Aspens precious Olympic heart!! So excited! The doc picking it up still has to give final approval once he sees it. Aspen is getting nervous again. Good news, I get to go doe with her to the OR! Keep praying! It's almost time! Thank you God for the family that said yes, please bless them immensely.

UPDATE: These kiddos are my world. I love them Sooo much. Still waiting...

- August 30, 2016

PRAY PRAY PRAY! We've got an offer!!! Surgery in the morning! More details soon, I've got to get back to Phoenix.

- August 29, 2016

This is right on the mark and why I am registered as an organ donor.

- August 29, 2016

I sit at home tonight feeling conflicted. Being home is bittersweet. I have two children who need their mom here in Tucson, and one who needs me in Phoenix. I am so happy to be home for a week, yet so sad that I am not with Aspen. My heart cries out to God wordlessly. What do you pray in a time like this? Dear God, take this! One phone call is all we need. One phone call saying someone said yes and that they are a perfect match. One phone call and we can finally move into 'stage three', finally able to start moving towards step four....home! Until then...until Gods perfect timing, I am left to try and balance everything out. No one can fully be happy during this time of waiting. Someone always gets left behind. This week it was Aspen. I gave her a hug and kiss yesterday, saying "We will be back on Friday" as her tears started to fall. I have not left her side for more than one night in the last three months. I know this week is something Aiden, Chloe, and I need. But man it is so hard knowing that I have a little girl laying in a hospital bed up in Phoenix with out her mom by her side. Now before anyone panics, my mom is by her side. I would never leave her truly alone in the hospital for more than a night. I'm just giving some insight into some of my struggles during this time. It's just me, someone is always going to be unhappy. I just have to do my best to make sure the scale stays balanced. That at the end of this, everyone comes out ok. No regrets, no bitterness, no hard feelings. Just a thank you God for getting us through this. Chloe, Aiden, and I had an amazing day today. We were able to go to church where we saw one of our worship team brothers get baptized. Then we all got loved on and were just able to enjoy the routine of church. I am still blown away by the love, encouragement, and support in every way that our church has and continues to pour out upon us. I'm so blessed to have found Casas. After church friends from church had us over for lunch and two hours after that we were invited to a baptism party. What a great day. This week i'm looking forward to just relaxing behind a light board and being mom to Chloe and Aide. Back in Phoenix, Aspen had an off day. She was more blue today and had a bad headache. Her trach was also plugged with sticky junk, which may have caused the headache and blueness. The RT was able to get all the junk out and Aspen felt better afterwards. My guess is that she was getting enough oxygen in, but she wasn't able to get her carbon dioxide out. That happened while I was there on Friday, and I ended up changing her trach. She started feeling better on both days. The only concern I have is that the RT today used saline to clear her trach today. I wouldn't normally be concerned, since this is something I do with her at home. What I realized on Friday, and forgot to pass on before I left, was that just one little drop of saline could take the virus that has so far not caused any problems, down to her lungs. Once there, Aspen could get pneumonia. As she is right now, they would go ahead with transplant if she got a good offer. If she gets pneumonia, then they would have to pass. She would keep her number one spot, but would have to wait for the next offer. So in order to minimize the risk of pneumonia, I decided to change out her trach if we can't get the junk out with plain suctioning. But I forgot to pass this info on to my mom and the nurses/RT's before I left. So now I'm praying that Aspen doesn't get pneumonia now....ugh. Aspens weight is also steadily increasing. Meaning she's holding on to more and more fluid. They will be weighing her again in the morning. And if her weight is still up, I may ask the transplant team if they are going to do anything about it. Other than her weight and plugged trach, Aspen had a good day today. She was excited to talk to me, Aiden, and Chloe on the phone. Now I'm going to bed, giving my worries to God, and praying we get a call soon.

- August 25, 2016

Aspen flew through her school work today. Her nurse was totally impressed with Aspen and wanted to encourage this amazing achievement. So child life found Aspen a lego set. Aspen is contentedly working on it while watching movies. Here's to many more school days like this one(wishful thinking). While Aspen is entertaining herself, it frees me to write an update....during the day!

As I sit in the hospital on day 95 of this admission, I have come to a realization. I am witnessing an answer to prayer. When i first decided to list Aspen for a heart transplant, I was frustrated with the plight of many transplant patients, I didn't understand why kids had to be in critical condition while waiting for a heart. Why couldn't they be listed while they were stronger. Wouldn't that give them a better chance at surviving the actual transplant surgery? So I prayed, pleaded with God, that somehow Aspen would get her heart before she became critical. I prayed for the perfect conditions while we wait. And that is exactly what I got. Aspen is on the top of the list comfortably waiting for her new heart. Since Aspen is stable on milranone, we are able to wait for the perfect heart. Passing up the silver and bronze hearts while we wait for gold. Today I offer up a prayer of thanksgiving that we can wait. Not every patient has that luxury, some are so critical that they have to take the first offer, unable to wait for a better match. 95 days in the hospital is way more than I had anticipated and is far from ideal, yet I am content. Content that God heard my prayer and is allowing us near perfect conditions while we wait.

I am constantly being asked what help I need while we wait. After much prayer, I have decided to finally address that here on Facebook. God has been faithfully providing for all our needs during this time. My first and greatest need has and always will be love and encouragement. Like I said in a previous post, this is the third hardest thing I have ever been through(my ex-husbands arrest and the two years following Aspens Fontan surgery being the other two). When I first started seriously started considering transplant for Aspen, I was so scared that I would be doing this alone. A few years ago, this was a real possibility for me. I would often sit with Aspen in the hospital for a week at a time without anyone visiting. Thankfully, I have since found a church home and my friends and family have stepped up. That being said, I can always use texts, e-mails, cards, phone calls, etc. I love visitors above all else, but I understand that is a little more difficult, since I'm in a different city, But if you happen to be in Phoenix, please feel free to stop in and say hi. Aspen enjoys seeing familiar faces too. The second need ties into the first and is for the time when Aspen finally gets 'the call'. I would love to storm the gates of Heaven with prayer. I want to set up 24(ish) hours of prayer for Aspen. Starting as soon as we get the call and ending after she is settled back into her room(maybe longer if she returns unstable). I will start working on a sign-up sheet for anyone who is interested(or is there anyone willing to head this up for me???). I would also love to be surrounded by friends family when Aspen goes to surgery, please send me a message if you would like to be here. A third way you can help is by visiting 'Aspens Super Heart Endowment Fund' website. This is a fundraising page for Aspen. It also contains information on what Aspen and the rest of us are going through, Aspens story in a nutshell, and how her page will help other transplant families in the future. These are my current needs. They will change after we get into what I call phase three of our transplant journey (post transplant) and move towards phase four (HOME!). I will update my 'needs list' as things come up. I am completely overwhelmed by the outpouring of love and support my family has received. Thank you all, I don't know where I would be without you!

- August 25, 2016

Sometimes it's the little things. God continues to bless me through others. This week I want to brag on two businesses.

I've said it before and I'll say it again, I love Dutch Bros Coffee. Not only is their coffee good, they have amazing customer service. Last week a cashier heard about Aspen and told me 'we are here for you'(they are open 24/7!). And in a strange way they are. I can count on them for a smile and a cup of good coffee (Oooohh that sounded like a commercial). And a bit more, today after hearing about Aspen again, they gave me two stamps instead of just one. So now I get a free cup of coffee the next time I go.

As some of you may know, my van needed to get some work done. The biggest thing was my AC wasn't working. And driving back and forth to Tucson twice a week was getting unbearably hot. I had received a quote here in Phoenix of $1500 to get it fixed. My family blessed me by offering to get it fixed. So I drove to Tucson to have Jason Mumma at AutoNation Honda Tucson Auto Mall fix my car. I know some people think that dealerships are super expensive and always try to 'fix' more than what is actually wrong. Not true here. They took their time to look at my van and assess what was really wrong. They cut my cost in half by fixing my ac instead of replacing my compressor.

So if you ever need a good cup of coffee or an honest and reliable place to take your car, keep these two businesses in mind.

- August 24, 2016

You learn to be resourceful while in the hospital. Aspen needed to do a science experiment for school. Said experiment needed several temperatures recorded. Well none of the thermometers here would register the lower temperatures. So...I commandeered the temperature probes from Aspens mist collar(my RT friends should get a kick out of this) and stuck them in the box. It actually worked out really well, giving us real time temperatures during the whole experiment.

- August 21, 2016

Sunday's are hard. It breaks my heart when I have to bring two of my kiddos back home for the week. While Aspen and I are in Phoenix. It breaks Aiden's heart too. Aiden was getting some hugs with Aspen before we headed back. (He's upset here, not hiding from the camera)

Aspen continues to do well with her virus. Her stomach is still a tad upset and her sore throat comes and goes. Her sats are still pretty stable though and she is perkier than she was a few days ago. See, prayers do work! One day closer to that Olympic heart.

- August 20, 2016

I love weekends! I love how well my kids get along...most of the time. Aspen is doing well with her cold. We can barely tell that she is sick. Just a stuffy nose, her throat no longer hurts. Praise God! They would go ahead with transplant if they happen to get an offer.

- August 18, 2016

Hello everyone! It's novel time!

I am so homesick tonight, it's been a rough week. Medically, Even though Aspen is still stable on her higher dose of milranone, she seemed a little off today. She started the day off with a bad headache, and was distant the rest of the day. Now she is laying in bed awake and can't seem to lie still. The good news is after having her weight jump up over a matter of two days, it is slowly going back down. She likes to hold onto fluid, and then slowly get rid of it. Aspens got to keep the docs on their toes. Speaking of keeping people on their toes; after being on vacation, Aspens cardiologist knocked me off mine today. When rounds ended, he chimed "ok, now that I'm back, Aspen can be put back on the list." My breath caught in my throat, I did a double take, and he turned to book it down the hall while laughing. He was totally joking(remember the heart offers) and it made me laugh. I'm glad to see he's comfortable enough to joke around with me. I need that. No new news regarding hearts. It may be weeks before we get another offer. I want it to be soon, I ask God for it to be soon, my family needs for it to be soon, and at the end I pray "thy will be done, not mine", just please give me strength and peace to wait another day. I can't see the big picture. If God chose to answer my prayer according to my will, the results could be disastrous. Aspen could end up with a non-Olympic qualifying heart. So here we wait, day 87 has come and gone.

As I said, this is shaping up to be a tough week. My weekend with the kids wasn't as fun as I like them to be. Friday was good, we got to snuggle and watch a funny movie. We watched a Disney classic, Candleshoe, Aiden and Aspen loved it and Chloe thought it was a little too cheesy. Saturday Chloe and I were able to get some school shopping done just her and I. I think she enjoyed having me to herself. That took a little longer than I had anticipated, so we had to scratch some activities I had hoped to do with everyone. And what we did decide to do didn't work out. We spent an hour trying to get the wii to work, so we could all play together. We finally gave up and decided to watch another movie. Thankfully Netflix pulled through, we all enjoyed a new to us movie 'Stardust'. On Sunday, I had grand plans of sleeping in followed up with slime making with the kids. Once again plans were foiled My mother instincts kicked in and I discovered something that needed to be addressed with my oldest. In the grand scheme of things, it's nothing terribly horrible. Yet it could develop into something horrible if not addressed now. So Chloe and I spent the entire day dealing with said issue. Thankfully Chloe was very open with me and the talk seemed to go smoothly. There were some disheartening consequences that put a damper on the rest of our afternoon together. As soon as our chat ended it was time to head back to Tucson. Again Aiden had a hard time leaving. That boy has such a tender heart and loves his family. Being apart is really hard on him. On the way home I had two kiddos pulling on me, Aiden wanted cuddles before bed and Chloe wanted to watch a movie with me. Being me, I planned a way for both to happen. But again, things fell through. Chloe wants to run for her cross country team, and had to take a concussion course before she could participate. Well, she finished that at eleven o'clock and promptly fell asleep. I had laundry, dishes, and lunches to pack, so poor Aiden was left to fall asleep on his own. I really feel like Aiden got the short end of the stick this weekend. Since he is having such a hard time being away, I like to maximize the time he gets with me on the weekends. This last weekend, he barely got any time with me. I could tell it weighed heavily on him. I'm praying this weekend will be better....for all of us. On Monday, it was especially hard leaving Tucson. I miss my family being together, so much. It tears my heart apart every time I leave Chloe and Aiden in Tucson. Yet I know in the long run, this is the best for everyone. Back to Phoenix I came, grand intentions of having an awesome Monday. I picked up a math test for Aspen, had an appointment for the AC in my car to get fixed, and still had plenty of time allotted for school. Everything was going great, I even modified my school plans so I could enjoy lunch out with my mom. Then I got back to the hospital after lunch. I had decided that Aspen and I would only do her math test and look through a microscope for science. I thought she would be excited. Nope...the moment I mentioned math test, the temper tantrum to end all temper tantrums ensued. It got so bad that I had to leave the room. I couldn't go far, since Aspens IV was beeping and no one was answering the call light. I also had to poke my head in every now and then to remind her to lie still. This was the moment when mommy and mommy of a chronically ill child were at odds. Mommy won, consequences were upheld, I was given the famous stink eye, and I pray it's works out to be the right choice. When Aspen finally calmed down enough to lay still. I re-entered the room, and took a shower. She agreed to lie still until I came out of the bathroom and would then sit up to do her math test. After my shower, she was a completely different kid. She flew through her math test with minimal guidance from me. When she's calm, she has no problem with doing math. I just don't get it. She did apologize on her own for how she acted and is going to try not to let it happen again. So far, she's kept her end of the deal. Math was completed both yesterday and today, even with extra math in the morning (multiple digit multiplication on the tablet). Being a mom is tough. So to add onto my pile, I received a call from the dealership as I was crying with frustration in the middle of Aspens melt down. My AC was no longer a cheaper fix. I had originally been told it was just a leaky valve and low coolant. Yeah, no, my compressor is shot. The estimate was five times what i originally thought. I didn't have the money, so my AC didn't get fixed. But on the upside, my transmission mounts DID get fixed. So even though it may be a tad warm, my van will still get me to and from Tucson reliably. A chat with Aiden and Chloe lightened my mood a bit, yet it also made me miss them more. Monday ended with a sad me drifting off to sleep. Yesterday was much better. Aspen flew through all of her school without a problem, I got my van back in better condition than I left it, Aspen and I were able to finish her Little Mermaid Lego set, and I had an enjoyable chat with my kiddos. Today was a mixed bag. Aspen got a horrible headache right after she woke up. It knocked her down for the rest of the day. I decided math would be her only subject today. We did have a surprise this morning. My friend Liz Ward stopped by to visit us. She is in the Navy and just got back from deployment. She and I were able to chat while Aspen was in math. I expected Aspen to just sit back and watch math today, but I was pleasantly surprised when I returned and found her sitting up and working on her homework. So I took advantage of this, and helped her finish her homework. After lunch, we relaxed and received some cheer. Aspen got two packages in the mail. An adorable Teddy Bear and a Lego set(which we started on tonight). Both were from heart families. Again, I'm amazed at the love and support my family continues to receive during this time. Our night ended on a low. Talking to Chloe, I found out that her best friend is changing schools and she is really bummed. Adding that on to my homesickness. I miss home. I miss being there for my kids, I miss going to church and loosing myself to myself as I design lights and help prepare to lead others in worship, I miss my newly found friends unnecessarily worrying that we will be forgotten, I miss just being in my house surrounded by my pets. Tonight I sit here typing not being ok. This is tough, the third toughest thing I have ever been through. I take comfort knowing that it's ok to not be ok. God is still by my side. Holding on to me as I cry. Finally giving Aspen peace to rest. Showing me in small, yet mighty ways that He is still near. An I love you from my kids, an unexpected offer to get my van fixed, continued love and support from my family, friends, church family, the heart community, and even people I've never met, and another day closer to Aspens olympic heart. Lord, thy will be done, not mine.

UPDATE: Aspen isn't feeling well this morning. She has a sore throat and upset tummy. I'm hoping the sore throat is due to the water running out in her mist collar last night. She got blasted with 15 LPM of hot dry air for 10-15 minutes. Her poor lungs are so dry now. Please pray that Aspen isn't sick and that she will feel better after receiving some salt water breathing treatments to rehydrate her lungs.

UPDATE: Thank you all for you encouraging words. What's the best cure for homesickness? Going home! I snuck down to Tucson today to have a quick lunch with a friend. It felt so good to sit in my own city and just talk with another adult. Thank you Tency . Aspen still feels icky. She is complaining that her throat and tummy hurt. It has been confirmed, she has rhino virus. This the virus behind the common cold. She has struggled with this virus in the past, yet has managed it on her own more recently. The good news is that her lungs are not affected. Her sats are being affected though. She dropped with minimal exertion and was also complaining of being short of breath while laying in bed. I'm hoping some of this is due to her being dry from her trach collar water running out last night. She seemed better after I changed her trach. I'm praying this runs its course quickly, will be gone in a few days, that Aspen will be able to manage it on her own, and it won't affect her transplant status. Please join me in this prayer!


Oh! I almost forgot!

Aspen talked to me more about her surgery fears today. She is scared she won't wake up. I assured her that she WILL wake up. And that if she doesn't wake up here, she will wake up in Jesus' arms. She said she hopes she wakes up here. And I told her I do too. And gave her a big hug. Such a hard talk. I asked her if she still wanted to have surgery. I told her what would happen if we didn't try. That she would continue to get sicker. Although scared, she is choosing to be brave and get her Olympic heart.

- August 16, 2016

SHOUT OUT! Can you all pray for my co-worker, his sister and the rest of their family? My co-workers nephew just passed away from a CHD. Another heart warrior fought valiantly before being called home.

- August 15, 2016

OOHHH, I just got a not so nice look from a nurse. Aspen had a temper tantrum of all temper tantrums, so I left the room for cool down time. I'm sitting outside and the nurse comes out and tells me Aspen is crying. I tell her I know and that she got in trouble. That's when I got the stink eye. I'm sorry, but I still need to be mom.

- August 12, 2016

When Aspen was first admitted to the hospital, I knew where I needed to be, by her side. I had no idea how I would be able to do this. My heart knew that God would provide, but my mind had no idea how and even doubted it. My advice for you today, never underestimate the power of God. Not only has He has met each and every one of my needs, He's exceeded them. I just got word today that an incredible organization named Care Fund has decided to pay my next THREE months of rent! God is so good. Thank you again to everyone who has and continues to help me and my family during this time. I am speechless.

Aspens fan mail!

SHOUT OUT! Phoenix friends, anyone have a Costco membership I can borrow tomorrow?

- August 11, 2016

Aspen got an offer for a heart, but they passed on it. It was a little too small for her. The good news is she is number one on the list for her blood type! We are so close! Please pray, pray, pray!

- August 10, 2016

This is how amazing my girl is. That is an 8 ounce cup of nastiness and through tears she drank every last drop. Due to all the diuretics that Aspen is on, her potassium is depleted. Potassium is vital to our bodies functioning properly, so the doctors need to replace it. This morning, we decided to mix the potassium with apple juice, bad idea. It tasted like tangy apple-orange juice with a teaspoon of salt(yes, I did taste it). Such a trooper! She earned an extra 30 min of Ds time for that feat of greatness.

UPDATE: So it's one o'clock in the morning. Why do I always get my inspiration to write at real weird hours. Ah well, here goes. This past week was tough. Two of my children are back in Tucson for school. Aiden broke my heart on Sunday. We were walking out to the car to head back to Tucson and he tells me 'I don't want to go back, I don't want to leave Aspen'. He then started sobbing. I scooped him up in my arms and held him while we both cried. Telling him I didn't want to leave either and reassured him that we will all be back home soon. The next morning he asked if I was going to head back to Phoneix and tried to get an exact time. Not wanting him to be watching the clock, I kept the time an unknown. I don't understand why my little family has to endure this. I don't understand why Aspen hasn't gotten her heart yet while others got theirs within a couple of weeks. I don't understand what the future holds. I do understand that God has this. In the grand scheme of things, Aspens heart is right around the corner. And soon, we will all be back home. Snuggling up on the couch together for movie night. Just enjoying finally being home together. His timing is perfect, and someday I will see how everything happened at just the right time. Until then, I ride the waves of good days and bad days. Missing my kids, and doing my best to make sure we will all come out on the other side unscathed.

Aspen continues to befuddle the doctors. She decided to start something new yesterday. And they are trying to figure out what it is. I was hoping it was a one time fluke, but it happened again today. Aspens hands have been turning purple and cold during her walk. Her sats also drop lower than her usual(into the 50's). When this happens, her face stays her normal shade of blue tinted pink and she is breathing normally. Her sats take longer to recover. Yesterday she was cold and exhausted after this happened. It happened three times during her walk today. Right after they had her walk, they checked the oxygen level in her venous blood. It was 30%, which is a little low. They are checking her at rest venous oxygen level in the morning to compare. Her renal sats stayed stable when her hands turned blue. So who knows, I'll be asking for ideas on what it is in the morning. Ah Aspen, she likes to keep us on our toes. He fluid retention seems to be better. He weight has been slowly dropping and her swelling is still going down too. They even cut her dose of lasix yesterday. Tomorrow we will see how she handled it. Tomorrow marks our 80th day here. And yes, she still has a smile on her face(unless she's doing her math work).

Other than missing their mama, Chloe and Aiden are doing well. They seem to be adjusting to their weekday home nicely. Enjoying the desert wild life, evening walks, and even helping to build a house. I couldn't have asked for a better place for them. Aiden is loving 4th grade and getting to know his new teacher. He was so proud to get a 95% on his spelling test last week. Chloe is adjusting to high school as well. She was surprised by how many kids there are. But she isn't letting that keep her from befriending anyone she sits next too. She also currently likes all her classes. I'm praying she continues to like them once the homework starts rolling home.

Thank you again to everyone for their love and support. Everyone's generosity continues to amaze me. I am truly blessed.

UPDATE: Guess what we started? Don't panic, all is fine. This is a normal kid problem blown WAY out of proportion.

UPDATE: They upped Aspens milranone to see if that helps her purple walking hands. I will update later on weather it helped or not. Aspen surely does love her milranone! After just a couple of hours, I could totally see a change. She got all smiley, started talking, and wouldn't stop! Still hasn't actually. During the wall she took off at a brisker pace than she has in several weeks. Her sats stayed in the 70's pretty much the whole time. We only had to stop once and I think that was only due to her holding on so tight to the wheel chair that she cut off circulation to her finger. I asked her if she got short of breath and she said 'yes, but not as bad as normal'. They did a venous blood gas as soon as we got back and it only dropped to 52%(it was 30 yesterday). She's also had a lot more output too. Which is a good sign her body is getting what it needs to work properly. They are still having trouble getting her potassium level where it's supposed to be. So they switched a few things up to try and help. One of her diuretics actually helps her hold onto potassium, so they increased that. They also upped her oral dose and are going to give her an IV bolus. I did find out they prefer oral potassium over IV potassium because the oral may increase her levels gradually, it keeps her levels more consistent, and they can give it more frequently. IV potassium will get her levels up quickly, but it also gets pulled out quicker thanks to all the diuretics Aspen is on. It's a great big balancing game with heart kiddos. Aspen is now watching a movie until after dinner when she has to do her math(uh-oh). I'm a happy mom. I like it when my girl feels better. Gotta keep her comfortable while we wait. Woot woot, one day closer!

- August 8, 2016

I have a high schooler! Chloes quote this morning; "I don't want my hair messed up. I spent all night making it perfect, by sleeping!"😂

- August 6, 2016

It's a good day!

- August 3, 2016

It's days like today that remind me how blessed I truly am. My situation is not ideal. It is actually almost the exact opposite of where I thought I would be. I was certain that my little family would home together by now. Aspen starting on her new life with a new heart. Yet here we sit, waiting. Each of my children in a different place, one in a city 105 miles away from me. Me not working, praying and hoping that God will work everything out. Seems pretty maddening right! Yet today, I had a calm in my storm. Thanks to the grace of God and amazing people in my life, over the last two days I was able to get everything for the next month squared away. Today I was able to just be mom. I was able to get through all of Aspens school work for the day with her while dealing with her fiery attitude about not wanting to do school work. Today was better than yesterday, and we finished by 1:00. That gave us the rest of the day for fun. We were even able to sit and work on a new Lego set together. Not only was I able to be mom for Aspen, I was also there for Aiden. Aiden started school in Tucson last week. God blessed me(and him) when a dear friend from church opened her home to both Aiden and Chloe. Being away from me is really hard on him. Especially being in an all new pace. Today he needed two phone calls from me. I was able to be there for him. Reading a story to calm him down before bed. After the second phone call, I received a text. My son was coloring on the floor quietly, completely content. My prayer is that he is finally able to get a good nights sleep. If not, I'll be able to try something different tomorrow. Chloe got me as a mom in a different way. She returned safely from over two weeks of trips on Monday. So today she was given the teenage dream and left alone. Chloe was able to veg out at my parents and do nothing but watch TV. In my opinion, it was exactly what she needed. I am truly blessed to be able to be there for all my children during this rough time.

Aspen is doing as well as she can be. She continues to be increasing short of breath upon exertion. This was discussed during rounds this morning. It was decided that due to the anatomy of her heart, there really isn't anything to be done, short of a new heart. They talked about giving her epinephrine to see if that would help. Epi is used to increase cardiac output. Dr. Zangwell pointed out that her cardiac output is pretty much maxed out. Even if her heart beats stronger, it won't improve her circulation. The way Aspens heart currently is, her blood mixes. Oxygenated blood mixes with unoxygenated blood. And when her heart pumps, the mixed blood has the option to either go to the lungs or out to the body. Her blood follows the path of least resistance. When the path of least resistance is to the body, the blood skips the lungs all together. This is called shunting. If her heart beats stronger, then this could actually make the shunting worse. So in short, epi will not help her problem. It was decided that being fluid overloaded will have an impact on how short of breath she is. And it is something they can fix. Dr. Zangwell feels that once Aspen gets all the extra fluid off, she will breathe easier. Aspen has been on IV lasix for a couple of weeks now. This is a powerful way to get the fluid off. It can also work too well. So today they switched Aspen back to the oral form of lasix. They are hoping that this will be enough get the extra fluid off without drying Aspen out. If it's not enough, they can easily start the IV lasix back up again. So as always, I will be watching. I had to talk to the charge nurse again today. The nurse didn't make it into our room until 9:15. That's over two hours after shift change and one hour past when Aspens meds were due. She told me it was due to her other patient being so sick. Aspen continues to be paired with really sick kiddos. This causes Aspens care to be substandard, since the nurse isn't able to get to us in a timely manner. I also requested that we get better continuity of care. Aspen seems to have a new nurse almost every day. So every day, I have to explain Aspen to them. It would be nice to get nurses back that already know Aspen and take good care of her. The charge nurse listened and agreed with most everything I said. She let me know that they would reassess the nursing assignments to make sure the load is balanced and that she would work on a list of primary nurses to take care of Aspen. All in all, a good talk.

Today we are one day closer to Aspen's Olympic heart and finally coming home!

- August 1, 2016

Hello everyone! Thank you for being so patient with my lack of posts this past couple of weeks. As school is starting, I've had my hands more than full. And as I sit here at the computer with a few free moments, I can't figure out where to start. So I will start with where I left off with Aspen. Things have improved a bit since I talked to the floor managers. Aspens call light has been regularly answered. And they have been keeping a closer watch on what she has been drinking. That is mainly due to the fact that I'm keeping after them. I still have an occasional nurse that will bring in a pitcher of water. I am quick to point out that I fill her water bottle with 375 ml's and will tell them as soon as she finishes it. Dr. Zangwell has also gotten after them. One morning during rounds Aspens weight had been brought up. On top of the nurse practioner and myself noticing her swelling, she was gaining weight rapidly. The residents remarked on how Aspen had been consistently negative (meaning she was getting more out than she was taking in/drinking). I quickly chimed in how the nurses had not been tracking her intake accurately. Zangwell proceeded to walk the ICU docs through treating based on the correct data they do have. So based on her weight, swelling, and symptoms (she was becoming increasingly short of breath) it was clear Aspen was fluid overloaded. So they increased her lasix. This medicine helps pull the fluid out of Aspens tissues and get it to her kidneys where she can get it out. After a few days of this, Aspen was still gaining weight, getting more swollen, and even more short of breath. This led to our second chat with Dr. Zangwell. After deciding to switch her to IV lasix, he came in to chat with me. He explained that something had set her precarious balance off and that they needed to help her out some more. He also brought up my frequent requests to be moved back to the 5th floor. He too is frustrated with Aspen being on the 6th floor. He feels that since Aspen is on inotropes (the milranone) and is needing more management of her fluid balance, she should be in the CVICU (option A). Option B is to keep us in the PICU until things slow down in the CVICU and we can stay down there (or Aspen gets a heart), Option C is to move Aspen back down to the CVICU every time they have an open room and then move her back to the PICU each time they need the room for a surgery. Since option A is not possible during this time, we are stuck with option B. I too agree that constantly moving Aspen is a bad idea. Option B isn't my favorite, but it is good to know that Dr. Zangwell is monitoring the situation and will get us back down stairs and keep us there as soon as he can. In rounds today, he reassured me that Aspen is still listed (I have actually wondered that on occasion) and that they are still waiting for her olympic heart. He doesn't want to take a high risk heart, just so that we can get the transplant over with. I totally agree with him in that. I don't want to do this again, even if it means a longer wait right now. So here we sit and here we wait. I have my good days and I have my bad. Thankfully I have my family and a loving and supportive church to lift my spirits on the rough days. I don't know what I would do without them. I was going to update on the non medical stuff too, but I'm falling asleep at the computer. Medically Aspen is doing better tonight, her weight is going down, and she has truly been negative over the last several days. She still gets short of breath easier than a couple of weeks ago. Dr. Zangwell feels she still has another kilo of fluid to get rid of(2.2 lbs). I will try and update on the rest tomorrow! Thank you again to everyone for their outpouring of love on my family. It renderes me speechless. I am truly blessed.

UPDATE: I GET MY KID BACK TODAY! I'M SO EXCITED!!! This is the kid I got back today, CHLOE! All my kiddos are in the same state again! Woo hoo! Poor Aspen had a rough morning, and I wasn't there😢. She woke up with a headache and no appetite. She felt better once she talked to Chloe.

- July 27, 2016

This is my church! I'm so blessed to be a part of it! Wanna be the hands and feet of Jesus? You should totally check Casas out. This last week, we collected over 4,000 pairs of socks and undergarments that will be donated to Marana and Amphi students in need. Way to go, church! The Essentials Drive continues through August 7th. Drop off donations this Sunday and next at the Essentials Drive booth in the auditorium.

- July 24, 2016

I'm homesick today.

- July 22, 2016

Hello everybody! Things have been super crazy busy around here. With the hospital battle, trips for Chloe, and getting everyone ready for school; I am beat! Everything is going ok at the hospital. I talked to the charge nurse, then went down and talked to the CVICU floor manager. They both agreed that these things shouldn't be happening. The CVICU manager talked to an intensivist in the CVICU and they are working towards getting us back down there(YIPPEE!). The following day the floor manager in the PICU came to talk to me. She was shocked that no one was coming to check on our call light. She told me that three different people get calls on their phones they carry with them. So there is no reason we should be ignored. She assured me the problem will be corrected. And gave me her card if I need to contact her again. Needless to say, the call lights have been answered a little quicker. I'll be watching to make sure it sticks. I still feel her care as a cardiac kid is lacking. They aren't paying as close attention to what she drinks. That is a big deal for cardiac kids, fluid retention is one of the first signs of problems. And if you don't know how much they are drinking, you have no way of knowing if they are getting it all out too. I talked to the transplant nurse practitioner this morning about that one. And she too has noticed the lack of charting in that area. Aspen is doing ok overall. We are going to cut back on her walks though. She has been getting more tired, dizzy, and short of breath with each walk. And when she struggles, her face is more swollen the next day. We want to keep her strong for transplant, yet we also don't want to push her past her limits. She is continuing to show us that it's time for her Olympic heart! So the wait continues. Today is two months that we have been waiting as status 1A. Although I know there is never a time line for transplant, I honestly didn't think we would still be here. Aspen is getting a little stir crazy, so we have had been more diligent in finding new and fun things for her to do. The child life specialist made a new poster for her. One we can change our days in the hospital on. Aspen likes that much better than etching tick marks into the wall. Added to the hospital craziness is back to school time. Aiden goes back to school next week, so I have been running around getting him ready and spending more time with him. Last night he and I were able to play bingo downstairs in the hospital. He is looking forward to starting school, but is sad that he will be so far away from us. I'm going to miss that little guy, and will see him as much as possible. Chloe spent the last week in camp with our church youth group. She returns today just in time to catch a plane to Colorado. She gets to spend a week with her godmother. She is so stoked and I am so jealous! Chloe starts high school the second week of August. I register her next week. She too is totally excited. So...things are crazy. I too have to figure out what my next step is. I'm praying a heart comes very soon, it will be good for all of us. Thank you all for your continued love and support during this time. Even though this is tough, I know Gods got this. Bring on month three!

UPDATE: Jessica with child life made this super cool sign for Aspen. No more tick marks etched into the wall!

UPDATE: Total God thing happened tonight. Chloe went on her first solo flight tonight to Colorado. It didn't go so well. We got to the airport and sent through security with plenty of time to spare. I hung around until her flight had departed; just in case. An hour later as I'm pulling in to drop Aiden off at my parents, I get a phone call. 'Mom are you still at the airport? I missed my flight.' AHHHH! My child learned a very important lesson tonight, do not wear your head phones when waiting to board an airplane. There was a gate change and Chloe missed the announcement, thus missed her flight. Thankfully my girl is resourceful and talked to someone who got her in touch with a agent from Southwest. The agent was working on getting Chloe a flight when my phone died! By the time I got back to the hospital/charger, they had called my mom and gotten Chloe on another flight. So here is the God part. There were no other scheduled flights to Denver tonight. There had been one, but it was canceled. The flight they got her on had actually been delayed FOUR hours! Thank you Southwest for taking such good care of my girl. And thank you Jesus for having Chloes back.

- July 19, 2016

Sad day today. I found out that my Uncle Ed passed away yesterday. He, my Aunt Val and their kids were our neighbors for 16 years in Colorado. They were good family friends and were there for my family during some very hard times. Uncle Ed was a great man and will be missed dearly.

- July 19, 2016

I'm going to be chatting with the charge nurse today. Aspens call light has been repeatedly ignored. It's been on for 20+ minutes now and her IV pump has been alarming just as long. This is probably the third time it's been ignored for an IV alarm. And the other day it was ignored and Aspen was sitting in a towel for 30 min as we waited. There have also been three times when they turned off her call light from a remote location and no one came to check on us. The transplant NP on the case now too. She just spent several minutes looking for someone and even she can't find anyone. AND Aspens sheets have writing on them from a past patient. Aspen told me she noticed the writing several days ago. I understand they are busy, but come on! Aspen is important too.

- July 18, 2016

We are in the top three!!! Ahh so exciting!

- July 17, 2016

Ah church, I miss you so! It was so great to be able to attend church today! I felt so loved! My kids were happy to be there too. It was heart warming to see everyone, sing my heart out to Jesus, and be fed an amazing word. Thank you Casas for exemplifying what a church is supposed to be. I'm blessed to be a part of it.

- July 16, 2016

It doesn't look like much, but this is the first meal I've cooked at home in almost eight weeks! Although I'm missing Aspen, being home for a whole weekend is just what I needed. I'm thankful I live close enough to the hospital to be able to come home. Some families are thousands of miles away from home as they await a heart for their child. I'm also thankful I have loving family and friends who are willing to sit with Aspen so I can take a break. Thank you Jesus for all my blessings!

- July 15, 2016

Chloe, Aiden, and I are home for the weekend(unless we get THE call)! Thank you mom for staying with Aspen while we are away. It is much needed yet bitter sweet. We all wish Aspen was with us and that we could just stay here.

- July 13, 2016

I had a scare yesterday. Aspen had a low grade fever and her sats were lower, causing us to bump up her oxygen. And she was acting under the weather. I was scared she was getting sick. I know it could happen, and that there isn't much we can do to prevent it. But I feel she is at an increased risk for catching something while we are up here in the PICU. Its what they call a dirty floor(I think I mentioned it before). Kiddos with viruses/bacterial infections come here. They take precautions to prevent these greens from spreading, but even that isn't a guarantee. A few days ago there was a kiddo walking the halls while Aspen was. He was supposed to be in isolation and wearing a mask if he was out and about. Well, as first he wasn't wearing a mask. And that's when he was walking near Aspen. I wasn't too happy about it especially when Aspen had her fever yesterday. and talked to the transplant nurse practitioner about it yesterday. She assured me she would talk to the team here and remind them how imperative it is for proper isolation procedures to be followed. She also let me know what would happen if Aspen does get sick before transplant. They don't make her inactive right away, sometimes they don't take them off at all. Aspen would have to be sick enough that they don't feel she could fight it once she's immunosuppressed. All I can say is I'm glad I don't have to make these decisions. What I can do, is take extra precautions to minimize her risk of getting sick. So I've been diligent about wiping things down with disinfecting wipes regularly, washing my hands more frequently, and making sure others are washing their hands. I used to have Aspen wearing regular shirts, but I don't anymore. The nurse would have to disconnect her PICC line to switch her shirts. This too increases her risk of infection. So I switched her to hospital gowns that have snaps down the arms. Ugh, I could drive myself crazy with all this. Then I take a deep breath and pray. Gods got this. He knows when Aspens Olympic heart is coming and will make sure Aspen is healthy at that time. But man, sometimes all this waiting is tough. Thankfully Aspens temp came down by yesterday afternoon and we were also to turn her oxygen back down too. She was also in better spirits today. We are one day closer to transplant and one day closer to coming home...

- July 13, 2016

This is so cool! I have a special place in my heart for donors. 17 years ago, Kacey nearly became an organ donor: she was shot as a student at Columbine High School. Instead, her quality of life was saved thanks to a donor. With severe damage to her right arm, doctors used donated tissue to rebuild her shoulder joint. This weekend's Donor Dash is about honoring those who have said yes to organ, eye and tissue donation and allowed people like Kacey to start a family of her own.

- July 12, 2016

Here are the results of face paint madness! This is what happens when the kids are all together. Pray I make it out alive!

- July 11, 2016

50 days....we have been at Phoenix Children's Hospital for 50 days. And Aspen still has a smile on her face. She is a remarkable little girl and she keeps the smile on my face. Chloe and Aiden help keep my smile there too. Especially on the tougher days. I love my little family so much. They are such an enormous blessing. Aspen continues to be stable on her milranone. Her crazy body likes to hold on to fluid for a couple of days and then get rid of it all at once. And her oxygen level does the same thing. Stable some days and drops like crazy on others. We are one day closer to getting her Olympic heart though. Aspen had a good day today, she got to watch all the movies she wanted while I worked on my computer. We celebrated 50 days with popcorn and a silly gift from the gift shop. She also received an etch-a-sketch she ordered today. AND she won in BINGO and got a travel light bright. We ended the day making a light bright scene together and playing the wok. Not a bad way to spend our 50th day here. We are still praying for the perfect heart at the perfect time. I'm hoping it comes soon.

We had a request for Aspen to sing Amazing Grace. This is one of Aspens favorite songs. We have been singing it to Aspen since she was an infant. There would be days when Aspen was inconsolable until Chloe sang her Amazing Grace. It was also a great encouragement for us when Aspen was so sick. Reminding us that God is always with us and that in the end He will be waiting to welcome us home. Here's the link:

- July 10, 2016

I could so use a day at Disney Land and the Beach today. I'm feeling a bit discouraged today. Aspen is fine, it's just been a long seven weeks.

- July 9, 2016

It's the little things. I found these at Target. They are fabric softeners. You put them in the dryer with your clothes and they keep your clothes soft. They make my hospital laundry chore more enjoyable.

Aspen is doing good today. We are having a relaxing day. Made a card, doing some crafts, walking, reading, etc. The transplant cardiologist stopped by this morning. Yesterday the NP told him about her lower sats. He told me that it sounds like her reserves are getting less and less. The team talked and there isn't really anything else to do for that. Just keep Aspens activity level to what she can handle without exhausting her. So we continue to wait faster. The cardiologist put it perfectly. We are waiting for the perfect heart, an Olympic heart. He is excited for the day when I won't be able to catch her. I too am looking forward to that.

- July 8, 2016

Even I sometimes have trouble realizing when Aspen is having a bad day. Two days ago, I was working on a new Lego set with her. It's a bigger set, so we were only doing a small part of it. I spent most of the time showing her where pieces go, trying to explain the directions to her, and helping her get the pieces in the right spot. I just figured it was due to her not having done Legos in a while. Or perhaps due to her inability to see and handle the small pieces well. Today she blew those theories out of the water. We did the bigger piece of the Lego set today. And I barely had to do anything. She was able to look at the instructions, make her set match and get the pieces solidly together. I barely had to do anything. I think I only had to help a few times with the really small pieces. This made me realize, she was probably having a hard day on Wednesday. Her sats have been dropping a little easier and she is retaining fluid again. She was even starting to loose her appetite. So it makes sense why she was struggling with Legos. Today was a much better day for her. She has lost some of the extra fluid, ate a good lunch, and maintained her sats much better today. She is such a trooper. She hides her struggles so well sometimes. So well that it takes a good day to see her bad ones. Here's to being one day closer to transplant!

~here is the Lego set we did. The smaller part she struggled with is on the right. She kicked butt today with the larger one on the left.

- July 5, 2016

Well..... it's 12:05 am on July 5th. And it looks like two heart day predictions were wrong. Only God knows the time and day that Aspen will finally get her new heart. And I'm ok with that. He will pick the absolute best possible time for it. I would probably pick the worst time for it. A friend shared a song with me today, and it spoke to my soul and brought me great encouragement. 'Take courage my heart. Stay steadfast my soul. He's in the waiting. Hold on to your hope as your triumph unfolds. He's never failing'. I will share the link at the end of this post. I needed to hear this today, because honestly I was discouraged. I had so hoped for a new Independence Day for Aspen. What mama wouldn't be. Yet I know God is here with me. He's going through this with me. He feels my discouragement with me. All while He's whispering 'just wait until you see what I have in store for you and Aspen'. So it's time to breathe, kiss my girl one more time, and thank God I had one more day with her before chaos ensues. And today was a good day. Aspen did several crafts today. She did a couple with her favorite employee here. Jessica with child life came by and helped her out with two crafts. Aspen loves Jessica and gets totally excited when she walks in the room. This enabled me to go and get some laundry done. It was time. Aspen and I were both out of clothes. Thankfully they have a free washer and dryer here in the hospital. That has been a Godsend(for me and the staff). Aspen also went on two walks. She did really good on the second walk. Her sats stayed in the mid-high 70's almost the whole time and she was only short of breath at the very end of her walk. I was even to convince her to take a third lap. She only agreed after I promised to make it a zig zag lap. We got to cut through various 'hallways' they have scattered throughout the unit. We gotta mix up our same circular lap somehow. After the second walk and a bath, it was time for celebration! My parents came by with food AND my other two children. It was really nice to celebrate 4th of July as a family. We had a couple of hours to kill between finishing dinner and the fireworks, so we played 'heads up!' It's very similar to the 'headbandz' game, but you use your phone instead of the cards. We had a lot of fun! Then we watched as the ballpark opened the roof and anxiously awaited the start of the fireworks. It took me about 30 min to get Aspen over to the window, all her wires needed to go with her. The kids really enjoyed the foreworks, we had a great view from the room. I loved watching their awe over the fireworks and just enjoying each other's company. I love it when my family is whole. Now Aiden and Chloe are tucked back in at my parents and Aspen is tucked in here and we are all settled in to continue the wait. Thank you for again for all the prayers and support. Keep praying for Gods perfect heart timing and for our sanity/peace while we wait.

- July 4, 2016

Happy Fourth of July everyone! We live in an amazing country! I can't wait to watch fireworks tonight with Aspen, Chloe, and Aiden!

- July 2, 2016

Aspen has a special visitor today all the way from Maryland. Kathie Millerwas Aspens very first home care nurse back in 2007. She bought Aspen some silly socks and felt they should be personally delivered. You can tell how much Aspen is enjoying this visit....we all are!

- July 2, 2016

I sit here looking at my girl tonight, torn between two roles. I'm torn between being mom or being a friend. Ever since being here, I have been struggling with Aspen over a certain behavior. At one point today, I asked her about this behavior. Right after our conversation, she turns around and does it! TV had already been taken away for the weekend(over a different issue), so I took everything else away. Aspen is now stuck only being able read and color tomorrow. I was so frustrated with her and wasn't really talking to her until I tucked her into bed. All the while torn between what I should do. I know I need to be mom, rules are rules and there are consequences for breaking the rules. And if I don't stick to the rules here, then I will deal with the aftermath when we get home. Then there is the other side of the coin. What if we get the call for a heart tonight. Do I really want to risk anger being the last feeling I have before sending her off to surgery? Will I regret not spending this night doing something fun with her instead of making her read quietly by herself? This is actually something I have always struggled with. How to raise my chronically ill child. It's such a fine balance between keeping things orderly and yet knowing what things to let go. My goal has always been to keep things as normal as possible with Aspen. Treat her just like I treat Aiden and Chloe(minus the things she can't physically do), including when we are at the hospital. After all, I've got to prepare her for the future. So even though it tears my heart apart, tonight I was mom.

Other than being mad about her punishment, Aspen is doing ok. During her second walk today, her oxygen level dropped a bit faster than normal. Now that I think about it, I shouldn't be surprised. It is now monsoon season, and she always has a harder time during the monsoons. The change in pressure plays havoc on her body. It's never easy to watch, it's actually kinda scary. At least here they can watch her. Other than that, her spirits are still pretty good. She is enjoying the steady stream of visitors we get( thanks to Keith and Sue, Joseph Fritz, DeAnna Fritz and their kids for visiting today and Irene Ortega-Carbajal for a visit Thursday) , visits with child life, daily crafts, BiNgO, and visits with therapy dogs. The cardiologist came by and talked to me yesterday. He is very hopeful Aspen will get a heart SOON! The current guess/bet is on Monday. Talk about an Independence Day!of course they can never truly know when Aspen will get her heart. But she is in the top five when being considered for a heart. And since she is a 1A, no one can cut in front of her. So, the only place for her to go is up! Please pray for the perfect heart in Gods perfect time. We are now on the 6th floor. About a week and a half ago, they had to move us up here to make room for kiddos coming back from heart surgery. And they have been busy ever since. We were supposed to go to the 'cardiac step down unit', but they weren't comfortable with her milranone. So we ended up in the PICU. The care up here is the same, but it is a totally different pace than the CVICU. It seems more active. There are always people bustling around. It is also a 'dirty' unit. Meaning there is more viral/bacterial 'sickness' up here. The CVICU is considered a clean unit, since they pretty much only admit kids who aren't 'sick'. But they don't kick them out if they do end up getting sick. And the staff up here don't get heart kids very often, so they aren't used to them. I had someone come in while Aspen was sleeping and made a bunch of noise. I kindly asked them to stop and come back when Aspen was awake. Heart kids need their sleep! Agai , it nothing that is compromising her care, just little things I've noticed.

I actually have a lot more to say, but it's getting late and this post is getting long. I will try and post another update tomorrow. Thank you all for your love, support, and prayers. I dearly love and appreciate each one of you.

- July 2, 2016

Visiting Aspen in the hospital. The girls love their cousin. And Aspen thinks Makayla is "so adorable".

- July 1, 2016

AHHH! It's getting close! Aspen is in the top five for a heart! And being 1A, she can only go up from here! So it could be any day now, any day! So excited and so terrified. I'll post more details later; I should get Aspen up and moving(it is almost noon after all😳). Please start praying for her surgery now, it's going to be long and tough. Specifically pray for her brain to be protected during surgery, that bleeding will be minimal, that scar tissue won't be an issue, that her body will accept her new heart, the surgeon, and for the donor family who will be giving the gift of life to Aspen.

- June 29, 2016

I'm feeling the love today! My ABF(bible study) came up to visit us today. Then they kidnapped me! They took me to a delicious hole in the wall restaurant for lunch. We had a great time chatting and sharing entrees. Thank you ladies, it's just what I needed. When I returned, there was a goodie basket waiting for me! Thank you to the Garette family! I will definitely use all the contents. And Aspen has also received a package. Someone sent her a comfy princess blanket. There was no name, so thank you to whoever thought of my girl and sent this. Aspen loves it! I am so blessed to have so many people standing by me during this difficult time!

- June 27, 2016

Last week, a few members of the Casas Church Kid City Worship team got together to record a special music set for Aspen. Aspen, we love you, we miss you and we can't wait until you return home!!!!

UPDATE: Aspen posted a great big "Thank You" to the Casas Church Kid City Players. Here's the link:

UPDATE: Have I mentioned recently how much I love my church? The whole church is surrounding me and my family with love and complete support during this time. I'm overwhelmed...I don't even know where to start. So I'll simply start by saying thank you Lord. And thank you Casas, you truly know what it is to be the church.

- June 26, 2016

Aspen was nominated as patient of the year at the home care agency we use for her home care nurse! Her case manager came down on Friday to share the good news. Aspen wants to be a nurse when she grows up(how fitting!). So they made her an honorary future Maxium nurse. They also blessed Aspen with a huge bag of goodies! Thanks Maxium Health Care, her smile shows how much she loves her scrubs!

UPDATE: Can you all pray for J? She had a setback today.

- June 25, 2016

Hello everyone!

I don't even know where to start.. I guess that's what I get for waiting a week between updates. Overall Aspen is doing well. She did have a bit of a rough day yes

- June 24, 2016

I was able to attend baptism night at my church! It was so beautiful to see 99 people publicly confess their love for Christ. Woo Hoo! And afterwards my kiddos (Aiden and Chloe) got to swim in the sanctuary.

- June 20, 2016

Calling all prayer warriors! Another hospital friend is getting her heart tonight! Please pray for "E"(I'm a parent right now, not a health care person...I probably could use their names), her family, the doctors, and especially the donor family. They are planning on taking her down around midnight.

UPDATE: Baby E's transplant was a huge success! Keep praying that all continues to go well as she recovers! Go heart Warriors!

- June 19, 2016

I had an amazing time at home! Chloe and Aiden were so happy to be home, they wanted pizza delivered. So who am I to argue. It was just what the doctor ordered a family meal at home, cuddles with the kitties, and a wonderful movie(Woodlawn). I was even able to go for a run. Then...the best part...I slept in my own bed!!! Heaven on earth! The next morning we met with friends for a delicious gluten free breakfast. Followed by church. Oh my, if felt so good to be there. Just what the doctor ordered. I felt loved from the moment we set foot on campus. Everyone was so excited to see us and were asking about Aspen. I was able to get fed not one, but two lessons. And best of all I got to sing my heart out to God while the worship team led us with an anointed acoustic musical set. WOW! I was surrounded by Gods love and peace today. I totally needed that. Before heading back to Phoenix I was able to join other good friends from church for lunch. Aiden and Chloe both had a great time at church too. We all came back reenergized and ready to rejoin the battle! Aspen did just fine while we were gone. My mom spoiled her. They did crafts and watched movies to their hearts content. No changes with Aspen, although she did seem to drop her sats a bit faster when we went for a walk. There will be good days and not so good days as we wait. Pray for Gods perfect timing as we continue the wait.

- June 18, 2016

I'm going to church tomorrow! Best cure for homesickness, take a break and go home. I'm so excited I get to see this! Acoustic worship songs woo hoo!

- June 18, 2016

We have been missed!

- June 16, 2016

Ariel had some extra time, so she came back to paint nails with Aspen! And even left her an encouraging note! My girl is super happy!

UPDATE: Here is Aspen with her gift, the sunrise seashell necklace.

UPDATE: Aspen is having the best day ever! She got to meet her favorite princess AND Ariel even gave her a present!

- June 16, 2016

I'm feeling a bit homesick tonight.

- June 15, 2016

- June 14, 2016

Aspen had a fun and busy day yesterday! She was busy all day long. We did crafts, played in REAL beach sand, visited with a therapy dog, went for THREE walks, oh...and ate food! One thing we had to tackle, she saw 'J' on our walks. It scared her a bit to see all the tubes J had. I had to reassure her that she will be asleep the first day and the doctors won't let her be in pain. She felt a little better today, especially after J waved to us as we walked by, even with all her 'accessories'. Although we had tons of fun yesterday, I think it caught up with her today. Aspen wasn't quite herself today. Her color was off, she was a bit moody, her energy level was down, and her sats were running low. So we kept things mellow today. I'm praying for a better day tomorrow. I'll try and get a more detailed post done tomorrow. Thank you again for all your prayers. I love you all!

- June 12, 2016

Tucson friends, please keep your eyes out for Woody. He went to school with my kiddos last year. He is a really sweet kid.

- June 12, 2016

Family movie day at the hospital. This makes my heart happy!

J is still in surgery but should be out soon! Talking to her parents this morning, I found out J had a failed fontan, just like Aspen.

UPDATE: Everything went well in J's transplant. They will be keeping her sedated for the next day or two to allow her body to recover. She's not out of the woods yet, sometimes recovery is harder than surgery. Please keep praying! Thanks a bunch!

UPDATE: Oh! Aspen is the same. She's happily hanging out on her milranone.

- June 11, 2016

Hey everyone! Could you please pray for Aspens neighbor? 'J' Is getting a new heart! It reminds me Aspens new heart could come at any time.

- June 10, 2016

Since Aspen is doing better again, I get to pick up Chloe from her Sells trip! I'm so stinking excited! I've missed her so much, and can't wait to hear how God used her!

- June 8, 2016

Time for me to eat and escape in a movie. Today was a crazy day. As I expected, Aspen perked right back up after her milranone was restarted. Shortly thereafter, Aspen(and I) were NPO. They wanted to start a PICC line. This is like a super sized IV. it is more stable than the normal IV's and they can draw blood from it. Aspen was not excited about this. She was actually really scared. And it's been so long since she's had a PICC, I wasn't sure what to tell her. They did give her versed, but she 'heard and felt everything' while taking a tour of the whole hospital(she told me she fell asleep and had a dream too). It broke my heart to see her so worked up and scared through the whole procedure. I just held her hand, rubbed her head, and talked to her throughout the whole thing. The good thing, we should be done, done with the tests and new lines. Now we can just hunker down and wait for a heart. It's so much easier to deal with things when there is a clear cut plan. Praise God for that. Aspen is now resting comfortably after a dinner of Popsicles. And I need some me time.

UPDATE: Well, that was exciting! Aspen just had her walk study. Her sats dropped farther faster! It actually scared me. I believe her sats dropped into the 30's by the time they sat her down. I was too concerned with making sure she didn't pass out to really remember clearly. I do know for sure her sats on her finger got to 40 and her renal sats were 30. The renal machine actually started alarming. She started huffing, puffing, and turning blue as soon as the doctor started the treadmill and her sats started dropping right away as well. Again last night I could tell the difference a few hours after they turned off her milranone. Usually, and when I say usually I mean every night before last night, Aspens sats go up as soon as she falls asleep. They didn't do that last night. Before bed, she needed 60% oxygen to keep her sats above 80. That happened during our giggle fest two nights ago too, so not uncommon. But two nights ago we were able to turn her oxygen down to 30% as soon as she fell asleep. That didn't happen last night, she needed the 60% all night long. And her work of breathing was increased too. Now I'm just waiting for the docs to come back by. In my eyes, the milranone definitely helps. I'm hopeful they agree.

- June 7, 2016

They just turned the milranone off. Now we wait and see what happens. The second walk study is at 9 o'clock tomorrow morning. Aspen is still super giggly tonight, it will be easy to see changes gauged by her mood changes.

Today I shared the elevator with the first neurologist to tell me my baby was a vegetable(as an infant) and would remain so for the rest of her life. He also told me it would be cruel to put her through heart surgery, since she wouldn't have a good quality of life. He seemed to be trying to figure out where he knew me from. I just grinned like a fool thinking of my 12 year old 'vegetable' just a few floors up; reading a comic book, drawing pictures, reading a menu, ordering her own food, and enjoying being the Queen of Sheba while in here. God performed a miracle for my girl over 12 years ago, He has continued to do so ever since, and I have faith He will do it again in the near future. This past week has been pretty uneventful at the hospital. Aspen has been hanging out on her milranone, waiting for a new heart, and dropping her sats whenever she goes for a walk. Tomorrow they will be turning off her milranone once again. Since Aspen continues to desat, there is a question of weather the medicine is actually helping Aspen at all. I honestly believe it is. But due to the nature of the medicine and the fact that being on it puts Aspen at the top of the transplant list, they have to be able to justify her being on it with recordable data. So today they took Aspen down for a walk study. They hooked Aspen up to several monitors and had her walk on a treadmill. This was rather stressful since Aspen has never been on a treadmill and she has balance issues. I was ready to catch her if she decided to fly off the back of said treadmill. But in true Aspen fashion, she rocked the test. Even though it kicked her butt, she gave it her all. Walking briskly like a champion for several minutes while her sats dropped to 63, her lips turned a brilliant shade of blue, and she was huffing and puffing like the big bad wolf. Ever since the study she has been exhausted and her sats have been unstable dropping with very minimal exertion. Even laughter is minimal exertion, right now. I got her giggling really good and as a result we were having trouble getting her sats back above 80 for a while. I joked with the nurse that she should chart 'Desat caused by excessive laughter.' The milranone will be turned off tomorrow morning and we will repeat the walk study tomorrow afternoon. If the study is worse and/or she is clearly worse without the milranone, Aspen will be placed back on it until she gets her new heart. If there is no change or the second walk study is better(HIGHLY doubtful), then we will most likely be sent home to await her heart. I was asked if they are ok with her sats being 60. The answer is no. They are not ok with that, having low oxygen saturations for extended periods of time can harm Aspens organs. It can even hurt her brain (which is what started this last crazy month). It is just that if the milranone isn't helping; short of a new heart, there is nothing else they can do for Aspen. They see that Aspen is sick, and the only way to "fix" her is with a new heart. If we are sent home, then that will mean Aspen is bumped back to level 1B of the transplant list. Which means an even longer wait for a heart. Today I asked if this long of a wait as status 1A is common(I've heard of kids getting hearts in ten days or less when they are status 1A), and they said it can be. The longer wait for Aspen is threefold. Her size, blood type and the complexity of her CHD. Her size is pretty self explanatory, they want the biggest heart that will fit in her chest. Secondly, Aspen has one of the least common blood types (I believe she is B....the rh factor doesn't matter for heart transplants), she can only take a B or an O heart. And thirdly, due to her complex CHD and the possibility of extra bleeding (I think), they want to be able to get her new heart in and beating within four hours. They have had several offers for hearts, but most of them have been too far away. They are taking their time and waiting for the perfect heart for Aspen. I can't fault them for that. If sent home, then the combination of the need for a particular type of heart and the lower level will greatly extend our wait time. I do believe that God has the perfect heart for Aspen, and the transplant will happen at the perfect time. But I am also human. I want to do what I can to make Gods part go He needs my help. Aspen has been doing really well through this whole process. Her spirits remain high. Like I said earlier, she gets treated like a queen in here. She can watch tons of movies, order whatever she wants to eat whenever she wants to eat, has multiplied her toy stash since being here, and has every type of electronic available to her. But she does have her rough days. She was really grumpy yesterday and needed extra hugs(and movie time). It didn't help that they needed to start a new IV. Aiden and Chloe are doing pretty good too. Chloe is in Sells right now with our church on a mission trip (please keep them in your prayers). She went last year and was really excited to go again this year. Aiden is spending time with my parents. He is turning into a fish and is getting spoiled. I'm doing ok too, just stressed a bit. With so many things up in the air, it's hard to make plans and know what needs I have. I have decided to take a month off of work to stay by Aspens side while in the hospital. It's where I have always been. This was a hard decision for me to make since I am the only source of income for our family and I have exhausted my PTO. Aspen needs me here. I am her advocate, no one else knows her like I do. I will notice things going south way before any numbers will show it. Equally as important, I don't want to look back on this time and regret not being here for her. No ones time on earth is guaranteed; but with Aspen, there is a real chance of her days being few. You all have been amazing during this time. I have felt loved through many offers of help. I am talking with a friend at church on setting up a fundraiser to help with my bills, so I will be passing on that information as soon as we get something set up(again, a really tough decision for me to make. I am fiercely independent). Another need I have is visitors. Doing this alone is tough. My parents are here; but since they are taking care of Aiden and Chloe, their hospital time is limited. Thankfully God has been good and blessed me with several visitors so far. Even some from Tucson(A HUGE thank you to those who have visited). I can never have too many visitors. So if you are in Phoenix, are passing through, or decide a road trip sounds nice; stop by and see us! Aspen loves visitors too. Over the next few days I will be diligent and write down the needs my kiddos and I have/will have. Another immediate need I have is prayer. It is truly the most important need. A friend came up with the perfect prayer request; please pray that God will continue to guide this situation and that He is constantly holding Aspen(and my whole family) in His loving hands. Also pray for His wisdom and discernment to be with the doctors. Thank you all for your continued love, prayers, and support during this time. It means the world to me.

- June 1, 2016

We just had visitors from Phoenix Theatre who did some Disney improv for Aspen. As you can tell from that smile, she LOVED it. She laughed her head off!

- May 31, 2016

This is how we pass the time in the hospital.... I'm sorry for the lack of updates, I will post a longer update later. I've been battling a migraine. Aspens sats have been all over the place still. They were going to try stopping milranone this morning, but decided against it. I'm a happy mama.

- May 30, 2016

- May 29, 2016

We are celebrating Aspens liberation from a seven year isolation! She was positive for MRSA sometime when she was here as a baby. And they take that very seriously here at PCH. We were finally here long enough to get through all the necessary steps to clear her from the MRSA stigma. Time to walk the halls sans yellow gown and hit the playrooms!

- May 27, 2016

Guess who is back on their happy drug! It's crazy how fast she starts improving with milranone. It takes four hours before its fully on board; but I saw improvement in her energy within just a couple of hours. Needless to say, we went on a walk this morning and she pooped out. When she woke up, I could tell she wasn't going to do well. Her energy level was down and she was very weepy. Half way around the unit her sats dropped into the 60's, she was short of breath, and needed to sit down. So we wheeled her back to her room and the decision was made to restart milranone! I didn't even need to push for it. Im one happy mama! And I'm sure you can tell by the picture, she is happy too. The current plan is to leave her on milranone for the next three days, then possibly try again. We are still level 1A, so a heart could come at any time. I'm ready for my girl to feel great again.

- May 26, 2016

I'm often asked "How do you do it". My first answer is always God. He walks me through this whole thing. Tonight I wanted to share a little bit of what God walks me through and how I get through all this.

I'm sitting here tonight pondering. Pondering while alone in a hospital room next to your sick child is usually never a good thing. I'm pondering weather or not I made the right decisions. I feel like the last two weeks have been crazy and chaotic. Should I have handled things differently? Would Aspen be in the place she is if I had made different choices? As a heart mom....shoot as a parent of any chronically ill child, this is such an easy trap to fall into. There is never a clear cut path to follow in the care of our children. There are always several paths to choose from...always at least two. To do something or do nothing. And yes, sometimes do nothing is the best choice and has the best outcome. All we can do is look at that moment, process what data we do have, listen to the doctors opinions, take a deep breath, PRAY, choose what we feel is the best path for our child, step out if faith, and give the outcome to God. Sometimes those steps happen really fast, while other times it takes weeks to years. Aspen has had a tough time since her cath. The cardiac surgeon warned me that the first two days would be worse, but this is ridiculous! Yesterday Aspen tried to go for a couple of walks. She made it twenty feet down the hall before getting really dizzy and having to sit down in the wheel chair. He sats were running low too, she needed more oxygen to maintain her normal baseline. The milranone was still doing it's job though, it was keeping her low sats stable. Today started of much better. She had more energy, her color was good, and she was ready to tackle anything. Due to the previous days dizzy spells, the transplant team wanted the intensiviest (specialized cardiac ICU doc) to join us on the walks. This way they could see for themselves what was going on and possibly offer suggestions. Aspen flew through the first walk with flying colors. She practically raced around the unit twice! She only complained of being short of breath once. And her sats were completely stable the whole time! This is the first time I've seen that in weeks! So, due to milranone being what it is and doing what it does(bumping Aspen up on the transplant list), they have to prove Aspen needs to be on it. So an hour after the walk, they turned the milranone off. And I literally sat and watched my girls whole demeanor slowly change. He sats stayed stable(she was sitting still), but I watched her face loose it's color and her energy just drain away. A few hours later we got her up to walk again. A few feet down the hall, I could tell this walk was going to be totally different. He sats were still in the 80's but she was already needing a break to breathe. Half way around the loop she needed to stop again; this time her sats were dropping, she was turning blue, and she was rubbing her head telling us it hurt. By the time we got her back to the room her sats were 55 and she was huffing and puffing. Back in bed she went and her oxygen was turned up. Her sats recovered fairly quickly, but she didn't. Aspen remained lethargic and even closed her eyes to take a nap. She NEVER takes a nap. Her face also flushed. As I type this, I wonder why I didn't push to get the milranone restarted right then and there. But since her vital signs stabilized pretty quickly, we waited. After a rest her color and sats did improve, yet she still seemed sluggish. At bed time something happened. She was settling into bed for the night and her sats just dropped for no real reason. They only got to 70, but still, that is a big drop for not doing anything. We upped her oxygen quite a bit, and she slowly recovered. I'm a nervous nellie right now. Typing this I see that pushing for the milranone is probably the right decision. I want to make sure I have no ulterior motives for doing so. Having Aspen on the milranone and in the hospital automatically puts her at the top of the transplant list. So here is where my what if's come in. Would she be in this state had I not pushed for the cath and milranone last week in clinic. And am I pushing for the milranone for the right reasons. Because my daughter truly needs the medicine, not just to bump her to the top of the list. Ugh, this is tough. I also am dealing with decisions for my family. My two other kiddos are still in Tucson. I hate having my family divided like this. They probably have more stability in Tucson right now, but man do I miss them. And I know they miss us, So is stability or being together as a whole family better. And work. This is a new problem for me. I've never been the sole bread winner while Aspen has been so sick before. I need to work to provide for my family, yet I need to be with Aspen. A a huge part of me wants to go on continuous leave at work. That way I can be where I know I need to be. Both for Aspen and myself. But I honestly have no idea how things will get taken care of. And not knowing what tomorrow will bring compounds everything. If we wake up tomorrow, go for a walk, find that Aspen has finally recovered from her cath, and truly no longer needs milranone; we could be home waiting for a heart tomorrow evening and the majority of these problems are solved. Yet if we wake up, go for the walk, find Aspen poops out again, and get put back on milranone; we could be here until Gods perfect timing for a heart and the problems will demand immediate attention. This is tough. I just want what's best for my girl I want her to feel better. Watching her struggle so much just breaks my heart. I want to do what's right by her, leaving no regrets behind. What to do....Breathe...For now, my girl is resting comfortably. I will use this time to breathe, put the data and doctors opinions aside, give it all to God, and loose myself in a movie. I'm not going to worry about tomorrow, it has enough problems of it's own.

UPDATE: My newest love bug niece Makayla.

UPDATE: Aspen called me in tears, she misses me! I'm coming baby girl! I do not regret going to Chloes graduation though l. Ugh...It's so hard having my family divided.

- May 25, 2016

This beautiful child of God is mine! How did I get so lucky!?!? I am so pleased with the young lady Chloe is turning into. I can't wait to see what God has in store for her. It's gotta be good!

UPDATE: Just sitting on I-10 trying to get back to my kid in the accident involving two semis has shut down the west bound I-10 at Picacho Peak. I'm praying everyone is ok. Thankfully Aspen is already at the hospital if they happen to get a heart for her tonight.

- May 24, 2016

Chloe is having her 8th grade graduation dinner and ceremony tomorrow night. As long as Aspen is stable(and not getting a new heart), I need to be there. I do not want Aspen to be all alone. Would someone be willing to hang out with my girl from around 3:30 pm until I can get back around eleven. Maybe two people to split the time up?

UPDATE: Aspen is out of the cath lab. She has been for a few hours now. She did great and they did find some extra veins to coil off. Now she has to lay flat for six hours. This is the worst part of getting a heart cath. She was really upset at first(due to the anesthesia wearing off) but settled down after getting some Tylenol and watching a movie. Now she's freezing cold and her sats are a little low for her. Ugh. I'll update more later.

UPDATE: Seeing my girl heartbroken is the hardest thing ever. Aspen was so upset before her cath this morning. She told me she was worried it won't help. What am I supposed to say to that? So am I? Which is exactly what I told her. That it may not work, but they are already trying to get her the one thing that will work. A new heart will make her feel better, but we have to wait for God to bring us the perfect one. We can't just say it's time for transplant and poof we've got a heart ready to go. That made her laugh a bit. I rode down with her as far as they would let me go. Hugging my girl tight, rubbing her hand, and praying with her. Seeing her break into tears as I said good bye and they wheel her away never gets easier. The cath should take just a few hours. They are strictly seeking out and destroying any veins that are diverting blood away from the lungs. I'm sure they will be getting pressures while they are in there. Depending on what they find and what they do will determine the next step. I'll will update more after Aspen gets back and I have more info. Please pray for the docs and Aspen as they work on my baby girl.

- May 23, 2016

I've decided to switch from getting Aspen a balloon for each hospital stay to a pair of silly socks! Even though she REALLY loves the socks, she was kinda disappointed about not getting a balloon. Silly kid!

Image result for crazy socks

UPDATE: Hello everyone! Just a quick(ish) update. Aspen has still been desating(dropping her oxygen level) with any exertion. Even while on oxygen. So after much deliberation and chart review, they decided to admit Aspen, try her on the milranone, and take her to the cath lab. We came in this morning and they started her on the medicine around one. Aspen has already shown improvement. Even she says she's feeling better. Her sats have jumped up into the 90's and we are having to turn her oxygen down. Her renal sats went from the 60's all the way up to the 90's. So YAY! Aspen likes milranone. So what is milranone you ask? It helps the heart beat stronger (increases contractility) and opens up her blood vessels (vaso-dialator). As I told Aspen, it widens the road so more cars can get through, while going faster, and farther. Tomorrow in the cath lab they will be going in to measure the pressures in Aspens heart and lungs. They will also be looking for any extra blood vessels that they can coil off/get rid of. These extra blood vessels cause some of the blood to skip the lungs. By getting rid of these, her sats should go up. Depending on what they find in the cath lab tomorrow will determine what the next step will be. While she is here and on milranone her status for transplant has been bumped up. Which means shes pretty much at the top of the list! They are hoping she will get a heart within the next few days. But of course, there is no guarantee of that happeneing. Aspen has handled today like a champion. She was so funny when getting her IV, she was freaking out until she found a favorite game on the i-pad. She didn't even say ouch when they poked her. So now I know the secret! The rest of the day has been spent watching movies, doing a craft, playing with toys, and ordering whatever food she desires. As my mom said, she gets to be the Queen of Sheba while in here. She totally deserves it. I am exhausted. I will update more tomorrow after the cath. Thank you all for your love, support, and prayers.

- May 21, 2016

My dream for the summer; take the kids to Disneyland and the San Diego Zoo....

- May 17, 2016

Three years ago I talked with my warrior and told her how sick she is and how sick she can become. On that day she decided to fight, even though it's scary and the outcome isn't guaranteed. She chose to trust God and go for it! Three years later we are finally seeing the fruit of trusting in Gods timing. I can't wait for when she finally has a whole heart! She is my superhero!

- May 12, 2016

Well...Aspen is Aspen. She likes to befuddle everyone. There are four options in front of us. 1.) Do nothing else while we wait for transplant 2.) take her to the cath lab and see if there are any collateral veins that can be coiled 3.)Put her on milranone and see if that helps 4.)take her to the cath lab AND put her on milranone. In more detail....1.) Apsen has already been considered for several hearts. They just haven't found the right one for her yet. So it could literally be any day that she gets a heart. And since Aspen is somewhat stable on oxygen and with very minimal activity, maybe doing nothing for a short wait is acceptable. 2.) Aspen is what they call a mixer. She mixes unoxygenated blood with oxygenated blood. Her bodies way of trying to fix itself is to make more blood vessels. More often than not these blood vessels cause more blood to skip the lungs. This could be one reason her sats are lower. By going to the cath lab they can see if there are any of these extra blood vessels and coil them off. Forcing more blood to her lungs thus raising her oxygen levels. 3.) They can put her on milranone. Which is an what that refer to as an inadialator(their term, not an official term....don't google it🙃). What this does is it helps her heart beat stronger and causes the blood vessels to dilate. Making it easier for the blood the circulate through her lungs. 4.) A combination of the last two could maximize her oxygen levels. And of course, if she gets placed on milranone and stays in the hospital, she will be bumped up to the top level of the list. If they try the milranone and it doesn't help, they can always take her off of it. I left this decision in the doctors hands, we should know what they decide tomorrow. He did ask my opinion and I told him that Aspen dropping to 50 and having a change in mental status really scared me. And that above all else, I want her to be stable/comfortable while we wait for a heart. The doc again agreed that confining Aspen to a wheelchair is really no way to live. So again we wait. If they decide to try something, they will probably schedule it for next week. They would rather not wait until it is emergent. I am in complete agreement with that. Last weekend was not fun, I do not want to play that game again. I feel like someone picked me up, shook me vigorously , set me back down, and told me to continue on with life. I'm a little frazzled. Please keep the prayers coming.

- May 11, 2016

All right, I'll do it! I'll finally write this update. I

Click here to Submit New FAQ or Changes to Existing FAQ. Thank you!

Q5: What exactly is Aspen's condition?

A5: Aspen was born with several sever congenital heart defects. She was going to be born with her left ventricle being too small (hypo-plastic left heart), a giant whole between her two ventricles (single ventricle), missing a valve (tricuspid atresia), a narrowed aorta (aortic stenosis), her aorta and pulmonary artery coming off the same spot (truncus arteriosus), her superior vena cava on the wrong side (heterotaxy), and her veins coming back from the lungs didn’t connect to her heart right (total anamolus pulmonous venious return).  Along with all of these heart defects, Aspens heterotaxy affected other areas of her body as well. Her stomach is on the wrong side, she has no spleen, the liver is centered, and her intestines were all on one side.

Q4: Define: Congenital Heart Defects.

A4:  Congenital (kon-JEN-ih-tal) heart defects are problems with the heart's structure that are present at birth these defects change the normal flow of blood through the heart and can involve:

  • The interior walls of the heart
  • The valves inside the heart
  • The arteries and veins that carry blood to the heart or the body
  •

Q3: Define: Vena Cava.

A3:  The inferior vena cava is also referred to as the posterior vena cava. The inferior vena cava is a large vein that carries de-oxygenated blood from the lower body to the heart. De-oxygenated blood means most of the oxygen has been removed by tissues, and therefore the blood is darker. This blood comes from the legs and the lower torso of the body. The inferior vena cava empties into the right atrium of the heart. Read more...

Q2: Define: Anamolus Pulmonous Venious Return.

A2: Total anomalous pulmonary venous return (TAPVR) is a birth defect of the heart. In a baby with TAPVR, oxygen-rich blood does not return from the lungs to the left atrium. Instead, the oxygen-rich blood returns to the right side of the heart. Here, oxygen-rich blood mixes with oxygen-poor blood. This causes the baby to get less oxygen than is needed to the body. Read more...

Q1: What is Milranone?

A1: Milrinone is an inotrope and vasodilator. It works by increasing the force with which the heart pumps blood through the body and widens blood vessels, which allows blood to flow through the body more easily. Read more...

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