Mom's Birthday

Severin is the hewhocannotkeepasecretifhislifedependedonit sort of kid. For 2 weeks he has been so excited for my Birthday. He would say "oh mom you are going to love what we got you for your birthday"
me:* oh really*
 Sev: "yeah but I can't tell you so don't even ask"- then laughs hysterically
This is the reason:

The bum is on a spring so it wiggles when you move the card. Like it is shakin it's booty

You know you are a boy mom when your Birthday cards include body parts or bodily functions. Maybe someday Neleh will get me a fluffy, sappy card. But *not BUTT* for now we will get a good laugh.

Provo City Center Temple Dedication March 20, 2016

When Neleh turned eight, she was most excited about being old enough go to the Temple Dedication. In addition we were able to go to the Temple and see the Brides Room on a special Mom and Daughter Tour. They asked for no talking but she had questions and I had so much to tell her. So I ended up carrying her through the Temple so we could whisper in each others ears. At the end of the tour they had our Bishopric hand each girl a white hankie with the Provo City Center Temple embroidered on it. Neleh was so proud, now she had a white hankie for the dedication. I do not know if she will choose that Temple to be married in, but the experience with her there is a forever treasured memory for both of us. I look forward to the day I get to be with her in a Brides Room again in the House of our Lord. Although I do not want to rush it here any sooner....

My 'dates"

Brothers...

J: Sev get your feet off me! as he has his feet on his bare back under his shirt
S: But you are so warm....

Heart kid  problems, cold feet...
HAHA!

Heart Month Day #29 Teach **Bonus DAY!!!!

Lucky this year Heart Month has an extra day!
Severin has taught us how to live in the moment, FOR the moment. He has taught us to Hope. He has taught us to see the good in every situation. He has taught us to have Faith. He has taught us to fight. He has taught us to pray. He has taught us to never give up. He taught me a different way to parent. This summer he has been asked to come and TEACH other parents with me in the Parent Hour at the Hospital. He is a natural in front of a crowd. Who knows maybe someday we will be voting Severin for President.

Heart Month Day #28 Love

So much LOVE! He began with LOVE. Everyone who has met him LOVES him. This boy brings the excitement to everywhere he goes. He LOVES everything. I ask him to pick one thing he LOVES the most, he can't decide. After much thought he says 'playing'! I hope he always has a LOVE of life!

Heart Month Day #27 Joy

JOY...
Every night when this little Monster finally stops and falls asleep. I am reminded of the journey we are on, His journey. That is joy. Joy for one . more. day.

Heart Month Day #26 Inspiration

Leave a comment if Severins Heart Journey has Inspired you in any way...
I have had the opportunity to meet many Adult CHDers. One is Michael. We met through a guy Morgan when on a date with. You may remember Michael from the blog post September 28, 2011 titled "our new heart hero- Michael" Michael changed me. He changed how I looked at Severin. I stopped looking at the "what ifs" and started seeing the "what now". My biggest fear is that I/We made the wrong decision for Severin's life. I didn't want him to ever feel like his life was a waste. Michael answered that. He never felt like his burden was a waste of his life. Michael has gone to Heaven. I never posted about that day. It is too sacred to me. He continued to inspire me upon his death, at his funeral, and even still on quiet days. He will always be in my heart.

Heart Month Day #25 Music

Music, Mewzick, Moosick.... The music that best fits is on Severin's First Birthday video, but of course I can't find it to post! But this is another fav https://www.youtube.com/watch?v=E9OcA8BM5PY

Heart Month Day #24 Strength

I know I can survive for a week with zero sleep. I know I can survive for months with minimal sleep.
My Strength came from somewhere.
That somewhere was the prayers from others, the service that was given to our family, the love we have for our son, the FIGHT he has, his zeal for life.
We are STRONG when we have to be.

Heart Month Day #23 Future

What does the future hold for Severin? Is he done with surgeries? He's good now right?
We have gotten past the stats and percentiles of viability. Severin is very Heart stable right now. But his future hangs heavy in both our minds. The truth is we just don't know, Doctors don't know, Researchers don't know. I remember the first time I bought Sev some sandals to wear for the next year, he was 3. I was so shocked that I let myself think of him being here the next year, I never had been able to think that way.

From Thoms perspective:
His future is by no choice of his own, it is his burden to bare. But he has and will continue to have all the support in the world to see him through. In spite of whatever challenges he may face, he is here for a reason, and because that reason is only known to the Lord, his future is certainly bright. I've always known that it is not Sev's intent to die, but to live and accomplish great things. The Spirit revealed this to me years ago, and I know that it's true.

Heart Month Day #22 Friendship

Heart Buddies, Heart Moms, BFFs

Everyone is put together for a reason, there is no accident we are part of each others lives

Heart Month Day #21 Family

Our Family has been the best! Supporting us in the way we need it most. I tease and say my parents retired to take care of me for the first year of Severins life. There were too many times they would come for a visit and end up staying because we had to go to the ER.
Beyond our Family we have been blessed with an amazing Ward Family. I will never forget the conversations I had with my very kind and loving Relief Society President. Our Bishop was always there to offer words of support and Priesthood blessings. We never went hungry. Neleh had the best play dates.
I could not go without mentioning our Heart Family. There is something about people who have been there, done that. They really get what is going on. I have been able to forge long lasting friendships with fellow Heart Moms. I love their kids like my own. We celebrate together because we know what it takes to get to where we are. When we get together it as if we have always known each other. It is a true Sisterhood to a club none of us want to be in but we are sure glad we are all in it together. Heart Moms are the strongest bunch of women I know.

Heart Month Day #20 Grief

I have been to too many funerals. I have stood by too many parents as they bury their child. Although I have not lost my child I grieve for their loss. I know I could be in their place at any moment. There is nothing you can say to a parent whose child goes to Heaven, nothing will comfort them, nothing will make the pain stop, nothing will bring their baby back. Some do not want you to say 'sorry for your loss', no one ever wants to hear 'they are in a better place'. I ask you on behalf of those who are grieving their child, please love them, and never forget their child. Because they never will.
My personal grief takes on a different look. I grieve the right after delivery snuggle. I grieve nursing. I grieve blessing him with family all around. I grieve that family couldn't come and see him. I grieve rough housing with Dad. I grieve because I have so much CHD information- the things you didn't know you didn't know. I grieve that he has to have so much pain so early in life. I grieve the winter lock downs to keep him healthy. I grieve that he can't keep up with his friends running. I grieve he gets too hot or too cold. I grieve for his future. I grieve the what ifs.

Heart Month Day #19 Scar

I knew Severin would have a big scar. But he has a lot of little ones too. I have kept a journal for Severin. After each surgery I would draw a "Severin body" and note all the lines he had that would become scars.

I wanted to be able to tell him His story. I wanted to have the answers to his questions about his scars. His physical scars are fading. His chest scar is so light it is hardly noticeable the others are all but gone.

The non physical scars are the ones we worry about now. We have NO idea what the medication he has been on will do for him/to him in the grand scheme of things. He had to deal with a lot of pain at a very young age, before all receptors were developed. It has made him have different coping skills then other children. When he doesn't like what is being said or done he checks out. This appears to people that he is just ignoring or being a brat. He has high pain tolerance. He can be very hurt and not say a word and never cry. This appears to others that he is fine, when he is not. It is treated as "not a big deal" when to him it is the worst thing ever, and he just wants acknowledgement and a hug. He has low physical endurance. This appears that he is being lazy, or that he is disobeying staying with the group. He does the best he can but sometimes his heart hurts. He has to learn to self regulate, and it doesn't look the same way as your kid does. He has to listen to his body-ps he is 5! But he does it, even when he really, really wants to run the bases! One time he self regulated during a game of tag. When we talked to him about it and reminded him of his special heart, and that it was ok to take a break he said "I know or else I will die" Seriously what 5 year old has to think about his own death!!! It is just a reminder to me that everyone has battle scars, not all are seen.

Heart Month Day #18 Hope

If you remember back 5 1/2 years ago to when Severin had his first OHS, it was 3 surgeries in one. He only had a 60% chance of living through it. They would stop and start his heart several times, as each piece of his anatomy was altered. His heart was the size of a walnut. It would be a long day for everyone. The day before surgery, after all the preliminary tests were done and his surgeon had all the information he could without being inside, he came to meet with us. Dr. Kaza and Dr. Mart sat with us in the CICU and explained what was necessary for Severins heart to keep going until the next surgery. Dr. Kaza (not LDS) told us he has prayed for guidance for what to do for our son to have the best outcome. He said he has spent the weekend in the Temple. He told us it does not get more complex then Severins heart. He prepared us for the possibility that he would not live. This is where I could not hold my composure any more and I started to sob. The uncontrollable ugly cry sob. I was so embarrassed for letting my emotions get the best of me. Dr. Kaza hands me some tissues and tells me 'it is ok Mrs. Quist I will do all that I can for your son' all I could say was an inaudible Thank you. The hours that followed after surgery where slow and fast all at the same time. His heart was so swollen from the trauma of the surgery, they could not close his chest. He had a big bandage over it. I sat there holding his hand, only moving when the Nurses reminded me to go pump. Hour after hour Nurses, Intensivists, Nurse Practitioners, Cardiologists would walk past, stop at the foot of his bed, look over the Nurses charts, look at the monitors, look at him and shake their heads. All in Amazement that he was doing so well. At times since I have dealt with guilt, did I WILL him to stay with me when he should have returned to Heavenly Father? Was I being selfish? I have resolved I did not, I simply did my part that I had agreed to do long ago. I loved him. I had HOPE. I would fight as long as he did. It wasn't until a follow up visit after OHS #3 that his Cardiologist, who was SO pleased with Severin, said "I really didn't think this day would come". We spoke silently through our eyes, mine filled with tears. I knew what he meant. Severin should not still be here and yet he is. He is not only living but thriving in a high quality of life way! 

Because of Severins successful Heart Journey he gives hope to others. Because as Parents facing the mountain called CHD in front of us we have nothing more then HOPE. We hold on to HOPE like it is the last thing on earth. In a few months he will be the PICU/CICU Parent Hour presenter, and offer HOPE to those parents first hand.

Heart Month Day #17 Courage

I am so thankful that Courage follows Fear in this journal prompt
.
Some days I have no idea where my courage comes from. But when I think about it I am reminded of a visual I have in my head. It is me kneeling at the feet of my Savior, Jesus Christ. He is telling me about this amazing boy who comes into my life and I get to be his Mother. A Mother is all I ever wanted to be. This boy comes with a set of earthly challenges. He will have an imperfect body. He will struggle. He will have limitations on earth. His time on earth may be short. The reason I get to be this Boys Mother is because my Heavenly Father knows I have the courage to be the Mother he needs. A Mother who isn't afraid, who will speak up for his needs when he doesn't have a voice. A Mother who will research and plan and never stop fighting for him. A Mother who will teach him. Not only all the little things in life but about His life, and His purpose in the greater plan. And I agree.

Every night, when Severin is asleep,  I put my hand on his chest and feel that crazy heart beating inside. And I thank it for giving me one more day with my boy, one more day of being his Mother.

Heart Month Day #16 Fear

Oh.MY. I think I could write a novel on FEAR!

This was on the wall in our room at the RMH for Severin's 2nd OHS. Before any surgery , procedure or owie we tell Sev to Be Brave, and Be Strong, you can do hard things

My Mantra

When Sev first came home he took a lot of visual attention. His vocal chords were paralyzed. So he didn't cry out loud. He would cry, turn purple and desat. If I was not constantly watching him I could miss this and it would prove fatal for him due to his delicate anatomy and the re plumbing of his heart. I tried to let him sleep in his own bed. After a few nights on his floor next to his crib we set up a bed in his room for me. He had a feeding pump that had to be watched. It would constantly get clogged, or stop pumping. BEEP! He could not maintain his oxygen saturations. He had a pulse ox on 24/7 that alarmed anytime his O2 levels dropped. BEEP! I would have to adjust his oxygen tank. I would try to sleep but for the first 4 1/2 months I did not. If I did sleep it was more of a pass out- brief nap from utter exhaustion. I wore my glasses all day and night so I could always see. I had deep indentations in my head and nose from them. I decided long ago if Severin was going to die he was going to die in my arms. Eventually he would end up in bed with me, in my arms, with all his monitors and O2 tank within reach. This was acceptable because if one day I didn't have him to hold, I knew I would never regret this parenting faux pas. He still sneaks into our bed at least 3 times a week, NO REGRETS!  It was a very long time after his second  OHS that I felt confident enough to leave his room. I cried a lot. I prayed a lot. It took all my mental energy to not worry, and not be afraid. I had to play out every possible scenario in my head. Thom had to give me a Priesthood blessing to help me through my fear. I had to give up control of the outcome and that was and still is the hardest thing I have ever done.
And yet I watch my Son live FEARLESS! I love it! I want him to always push the limits. He is HOPE!

Heart Month Day #15 Change

We call it "the new normal". Getting used to the new normal over and over and over...
I am a planner. I write lists. I have a hard time when things do not go according to my list/plan. Severin's heart journey has taught me to 'roll' better. Don't get me wrong I like my lists! I have to let things go. I have to have faith. He was Heavenly Fathers son before he was mine. He loves him as much as I do. Sometimes He has a plan too. Most of all this is SEVERIN's life, His heart, His plan. I have also learned to CHANGE the things that I can and make the best of the things that I can't. I can not always CHANGE the situation or the outcome. And sometimes it CHANGES me.

Thom and Angee Valentines Day Q&A

1. Where did you meet your other half? Care Center for Handicapped Males

2. How long have you been with your significant other? 19 years, Married 11+ Years

3. If you're married, when did you say "I do"? June 25, 2004

4. What song did you walk down the aisle to? Or what is your song? Nothing specific- we have totally different music genres but if we were to karaoke it would be" I got you babe" ~Sonny and Cher

5. Do you have any children yet? Yes!

6. What's your favorite thing about your other half? His butt- oh is that appropriate for this question? 

7. Were you and your other half high school sweethearts? He was in High school but I was not ;)

8. Where was your first date? Tacobell

9. How long were you dating before you said "I love you"? I think we both knew right off but we didn't say anything for a few months, Thom says he tried before that but I told him to 'SHHH'

10. How long were you dating your other half before he/she proposed? Which time? haha! I proposed to HIM in April 2004 and we were married in June- I had already scheduled with the Temple

11. Where is your favorite place you have traveled with your other half? Caribbean

12. How do you and your other half usually spend Valentines Day? take out Dinner in our bed watching Netflix

13. What does your favorite 'date night' consist of? an Activity, Ice climbing was fun

14. What is the best gift you have received from your other half? Thoughtful fine jewelry

Heart Month Day #14 Nurses

So many, many Nurses! Julie saw us through the first two surgeries. Then she decided to retire before we made it back for the third one.

Heart Month Day #13 Doctors

We have been blessed to live so close to an amazing hospital.
He has had the same cardiologist from the fetal echo to current. Dr. Su
The same Cardiologist/Cath Lab for both heart caths.I can't believe I do not have a picture of Dr, Grey!
The same anesthesiologist for every surgery. Dr Pribble- except Dental and boy did I had a long conversation with him.

The same Cardiothoracic Surgeon for all three heart surgeries Dr. Kaza
We have a great family Doctor who is also a Heart Dad to a CHD Angel. Dr. Walton

Neleh's Baptism!

This GIRL!!! She is so stunning!



What a prefect day for our little Miss!
We went shopping for her white dress months ago. We decided it needed a little pop of color. I sewed sequins in the middle of each flower on the top part. At one point when I had the front and the sleeves done, I had shown it to Neleh for approval. She said "you know mom you are going to have to do the same thing to the back." Yes, I know, I planned on it. Gram Quist crocheted her blessing dress and sweater so it was only perfect that she crochet her Baptism sweater also. Grandma Sue went to work crocheting a fluffy ruffle on her socks.
Her cousin "Thing 1"- aka Jeana (Neleh is Thing 2) played the piano for opening and closing songs. They are 5 years apart and so much alike!

Heart Month Day #12 Recovery

Recovery: Have we recovered yet?


Severin's first 2 surgeries were pretty rough. The first being so complex was complicated enough. The second being chased be a secondary staph infection made for an unpleasant stay. But he more then made up for it with his third surgery.
 Aside from Heart surgery he has had to recover from regular childhood illnesses that take him twice as long to get over as his siblings. He bleeds really well due to his aspirin. A simple BONK turns in to a huge bruise or a big bleed out. He still has a dent in his head from last year when he tripped over the remote and smashed into the entertainment center.I think we are in a daily recovery from something.

Heart Month Day #11 Surgery

Severin has been through a total of 18 1/2  hours of Open Heart Surgery, and 6 hours of Heart Caths-minor surgery.

Nothing can prepare you to see your baby so swollen, with so many bandages, tubes and wires. I am so thankful for the very skilled and capable hands who have brought my son through these surgeries and back into my arms.

OHS #1

OHS #2

OHS #3

Heart Month Day #10 Echo/EKG/X-Ray

Too many to count. The echos started as Fetal Echos in April 2010. They would get a visual of his heart while still in the womb through ultrasound. Every Cardiology appointment is the same 3 tests. Sometimes we call the EKG the "octopus" test. Now he likes to take the 'stickers' off by himself- they are really sticky and he has a ton of them! He used to cry for X-rays, now he just stands there and does what they say to do, as long as he gets to see his skeleton.

Heart Month Day #9 Hospital

Sometimes I felt like a hostage. And when I would come back for appointments I was always afraid he would be admitted and I would have to leave him there again. Severin has spent a total of 47 days at the hospital which isn't too bad. NG tube problems, Incision infections, blood transfusions, Heart Caths, Dental work, and surgeries. He is part of the "fastest Fontan club" home just 5 days after his 3rd open heart surgery.

Heart Month Day #8 Milestone

So many delayed Milestones. The constant awareness of what he should be doing, and how to get him ahead before he has another surgery. Sitting up, crawling, walking, talking, potty training, Pre- school, baseball, reading... Then there was Kindergarten and I hope for many many more first day of school photos

Now this one right here fills my heart with JOY

Heart Month Day #7 Support

Family is a given. My belief system is a assumed. BUT I would not have made it without Heidi. Heidi and I connected through the local CHD support group Intermountain Healing Hearts. I am not 100 % clear on how we first connected. A lot in the beginning is a blur. At the time IHH was a website with a chat forum or a messaging program. I think that is where we first found each other. Searching for someone who has your childs same or similar diagnosis becomes an obsession, a quest for HOPE. In September IHH holds a CHD Awareness walk. We knew each other would be there. Of course we were late. Getting 3 kids under the age of 5 out the door by 8 am was never going to happen. When we made it there this nice lady holding a baby came and asked me if I was Angee. She tells me she has been asking everyone with a new baby if they were Angee all morning. And that is where it all began.

We would spend our "Sunday Lock Downs" emailing each other. Then we graduated to phone calls and texting. Now I don't think a week goes by with out a "how is everything going" text or call. She "gets" me. She has talked me off many ledges. She has validated me when I thought I was surely cracking up. Our friendship has evolved from Heart Moms to true friendship in all facets of our lives. We look forward to our Gunnell-Quist Memorial Day camp outs. We celebrate with each other. And we cry, a lot together.

Heart Month Day #6 Coping

My way of coping is to give back to those who are not as far on this Journey as I am. I started volunteering for the Foundation at PCH- they are the fund raising component of the hospital. Then I served on the Board of Directors for the non profit organization Intermountain Healing Hearts. Now I give Parent Hour Presentaions quarterly at PCH to ICU parents on coping with their new normal. And this year they have asked Severin to come and present with me in the spring and summer. I enjoy giving back to a Hospital and an organization that has given me so much.

Heart Month Day #5 Doctor Appointment

From every 2 weeks Cardiology, Monthly Pediatrician and daily OT, PT, Speech, and Home Health to Yearly Cardiology. WOW!
Severin still likes to remind us he is a unique snowflake. We have to Pre medicate for any dental appointments. And go to PCH for any dental work
I am reminded of one Dr. Appointment that will forever be etched in my mind. I had to have my gall bladder out 5 weeks after Severin was born. He had only been home for 2 weeks. The next week he had an appointment with the Pediatrician. I was advised not carry anything over 10 pounds post op. Severin and all his "accessories" were will over 10 pounds. I called my Sister-in- law, Teresa to help out. She carried Severin in his car seat, his O2 tank, Pulse Ox, Feeding bag, and diaper bag, not to mention the tubies coming from everywhere, and the BEEPS. As we walked into the office I had to laugh at how funny we must look. We didn't have fancy phones back then or I am sure we would have snapped a photo to prove just how great we looked. Teresa looked like a pack mule holding a baby in a car seat. While I could barely shuffle myself along. Heavenly Father can not take the burden away but he puts people in your path to lighten that burden.

Heart Month Day #4 Weight Gain

Severin has always had "good nutrition" as his Surgeon Dr. Kaza would say. But it was not without it's challenges. I pumped breast milk and then fortified it with high calorie formula for 14 months. The formula came with the price tag of $40.00 a can. He had to almost double his weight in 4 months to be big enough for his 3rd surgery, his heart was in need of  the surgery. Through lots of hard work and tons of calories he made that goal. As Sev has gotten older we still calorie pack the kid, he has always been a good eater. He has almost made it to the 40 pound mark.

BABY NUTRITION!

Heart Month Day #3 Medication

Coming from the post op days of IV poles with so many meds on them they look like Christmas Trees, to this little 81 mg aspirin, We are so BLESSED!

Heart Month Day #2 Diagnosis

It was March 4th, routine ultrasound on baby #4. I made it before Thom so our amazing ultrasound guru (Jay) gets started, with just me. I know the drill look at the baby's heart stop #1 because they get too wiggly later on. I know something looks different. Jay is whispering now this is right and this is left. I say Jaaay, does this baby have it's organs on the opposite side? He reassures me that we can look at that area again later. Thom has made it by now and is holding my hand as I fight back the tears and communicate non-verbally with him that something is not right. We didn't want to know the gender so Jay checked everything else out, all was normal. But he kept coming back to scan the heart. It did not look like the other kids hearts. Finally after an almost 2 hour ultrasound, Jay puts his hand on my shoulder and says "something is not right with this baby's heart, I am seeing that the tricuspid valve is not developed and the right side of the heart is not developed"This was the first time I have ever heard Hypoplastic Right Heart Syndrome. Then he strongly advised us NOT to Google it :) We left the office, we sat together in the van, I wracked my brain for what this all means and tried to give Thom hope, I couldn't, I just didn't know. We decided we needed to know who this person was, boy or girl. After we saw his appointment leave we went back in and asked for him to tell us the gender. He said it is more fun to show you! So with our tear stained and puffy faces we met our son.
A month later we went to a Fetal Echo that confirmed everything that could be wrong with Severins heart was. We fondly refer to this day as our "Holy Shit Day"
Severin's shortened diagnosis is: HRHS, Tricuspid atresia, TGA- post Fontan
Remember this from Pinterest?

Heart Month Day #1 My CHD Hero

This Little Mister came into our lives and gave us so much HOPE. He is always "ON". And now he gives that HOPE to others

February is Heart Month

In honor and support of our Heart Hero I will be posting each day. Before March 4,2010 I didn't know what a CHD was. Now I take every opportunity to spread awareness.

Neleh's 8th Birthday Trip!

She had a list. She knew what she wanted. And we made it happen.

Ready to go!
And then our flight was cancelled due to fog. So we got some KFC and spent one more night in our own beds. We will try again tomorrow.

TAKE TWO!

In flight! Fly-CHECK

Out to lunch-CHECK
Introducing baby Girl to animal style!

Favorite food groups Candy and Chips-CHECK

Visit a Temple-CHECK
Newport Beach LDS Temple

Have her hair done in Elsa's Salon-CHECK
and nails and make-up

The Elsa Hair Do!

Build-A-Bear-CHECK
Meet MAX the best smelling,barking,and dressed dog we have ever had

Lego Store-CHECK

We pulled over to get some gas and across the street is this donut shop. Neleh asks from the back seat'Mom can I get a donut from there?' You bet! So while Dad gased up the car we walked across the street and got her a glazed donut for the road

So happy to see the Brothers