Monday, February 11, 2013

Asher James's Heart Story

In honor of CHD awareness week, I thought I would share our heart story in it's entirety. For those who already know it- sorry!

During my pregnancy with my third child, at our routine 20 week ultrasound, my world changed. I found out that my son had something wrong with his heart, though at that point they didn’t know what the extent of the problem was. There were parts of the heart that should be present, but they couldn’t see them. I was terrified. I had to wait a month before we could see a pediatric cardiologist and have a fetal echocardiogram (ultrasound of the heart of the baby), which would give us more answers.

Rather than remain terrified, I studied. A LOT. I was on the computer for hours at a time, learning all I could about the heart, how it functions, what the prognosis is for various heart defects, and what the process is for repairing the different defects. I was very prepared when we met with the pediatric cardiologist. At the first ultrasound, we found out that they thought our son had a condition called Tetralogy of Fallot with Pulmonary Atresia. It wasn’t the best case scenario I hoped for, but it wasn’t the worst. He had two holes in his heart, his aorta was large, and in slightly the wrong place and his arteries that supply blood to his lungs were either very tiny, or non-existent, because they couldn’t see them on the ultrasound. We scheduled another ultrasound for later in the pregnancy.

I can’t count now how many times I had fetal echocardiograms done during the pregnancy, or how many specialists we saw- geneticists, high risk OB/GYN’s, pediatric cardiologists, case workers. Each appointment had worse news. His condition was more complex than they initially thought, and he might have a chromosomal problem. In spite of everything, I stayed very upbeat. It wasn’t a picnic, but I coped. By the end of the pregnancy, my husband had wrapped his brain around it all as well. We felt as prepared as we could be for his birth.

Asher was born on my birthday, in April 2010. The labor was induced, but I was determined to have a natural delivery in spite of everything. I was still able to have my midwife deliver him at the hospital. He was immediately taken to the NICU after he was born, but I was able to hold him very briefly before the umbilical cord was cut. He was beautiful. I was happy.

Once he was born, they were able to see his heart much more clearly, and fine-tune their diagnosis. Asher’s official diagnosis: Tetralogy of Fallot, Severe Pulmonary Atresia, Discontinuous Pulmonary Arteries, and MAPCA’s. Translation: He has two holes in his heart, he had very tiny arteries supplying blood to his lungs, but they didn’t connect to his heart in the typical way. There was a small connection to the aorta, and that is what was supplying blood to those arteries. He was missing his pulmonary valve completely, as well as the main "trunk" of his pulmonary artery. He had extra arteries that grew out of his aorta and supplied additional blood flow to his lungs. He tested negative for the chromosomal disorder (which was a good thing- it would have complicated things further).

He stayed in the hospital for eight days after he was born, and came home on oxygen. When he was 4 weeks old, he had his first open heart surgery (coincidentally, on my daughter’s birthday). They were trying to get those teeny tiny arteries to grow, so they could buy some time and Asher could grow larger before he needed a major repair of his heart. One week after surgery, he came home again. We enjoyed our summer with Asher.

In August, it became clear that he was not doing well. We scheduled his next surgery for that October at Stanford (their surgeons specialize in heart defects like the one my son has). In September, Asher’s condition continued to deteriorate. He was placed on oxygen, and his cardiologist called Stanford and had his surgery bumped up. We received a phone call on a Tuesday, informing us that we needed to fly out the very next day (my son’s birthday- this baby had a thing or birthdays!) to Stanford. We quickly changed our flight arrangements, arranged care for our two other children, found a friend-of-a-friend-of-a-friend-of-a-friend to stay with (thank you Facebook!), and we were off.

There was a lot of pre-operative testing to do, blood work, imaging, etc. The following Monday Asher went in for a surgery called a complete unifocalization. The surgeon closed the holes in Asher’s heart, placed a graft to widen his tiny arteries, placed a new pulmonary valve from a cadaver, place a cadaver "conduit" for his main pulmonary artery, disconnected all but one of the "collateral" arteries, and took one of the collaterals, disconnected it from the aorta, and grafted it into his branching pulmonary arteries. The surgery took twelve hours; he was the second surgery of the day, so they didn’t finish until 1 am.

Asher was a rock star, and recovered quickly. We enjoyed our time in Palo Alto as much as we could- we read books in the sunshine on the patio off of Asher’s room in the ICU while he slept and recovered. We made amazing new friends with the family we stayed with. We ate wonderful meals supplied to us by virtual strangers.

After one week, Asher was discharged from the hospital. We went home and resumed our life.
Exactly one year later, Asher needed to have open heart surgery again. This time we were able to stay locally (thankfully- since I had just had a "surprise" baby 2 months prior. Don’t worry, we are officially done now!). The new valve and conduit that were placed in Stanford had failed, and needed to be replaced. This time Asher surprised everyone, and was out of the hospital only 3 days after surgery!

We are almost 1 ½ years post-op, and he is still doing well.

Asher is an amazing little boy. This isn’t the end for him; he will always need more surgery and is monitored by cardiology every 6 months. He has residual problems because of all of the surgeries- he is quite small for his age, he has speech problems, a sensory disorder, feeding issues, and behavioral issues.

But he is the happiest little boy you will ever meet. He greets everyone with a hug, and just exudes joy. I wouldn’t change any of what we have experienced. I have grown so much. I appreciate my children more. My marriage is stronger. I am stronger. I have even discovered my passion and I am currently completing my BS and plan to apply for medical school in two years.

My take away from everything is: sometimes, bad or scary things happen. There is no rhyme or reason to it. I had a choice to make when I found out about Asher’s condition. I could be scared, be angry, and wonder "why me?"and let that fear and anger eat at me and destroy my life and marriage. Or I could face the challenge head on, strengthen myself with knowledge, and remain happy, upbeat, enjoy all aspects of this life- the good and the bad, and find something to be learned form every experience. I chose the latter.

Friday, February 8, 2013

To My Love

Ten Years today love.

I could never have imagined ten years ago where we are today- Back in college, living in the Northwest, four children...
Things certainly haven't gone the way we imagined all those years ago, but I love where we are now.

February 8th, 2003 Just young kids starting out!

2004 brought sweet Taylor Marie, and I started college. We moved from Salt Lake City to Sandy.

2005- We bought our first "official" house in Sandy

2006- I start Real Estate School, we start trying for baby number 2

2007- Success! We become pregnant with Jonathan, and he is born that September

2008- The year of the camp-outs! We bought our camper, and proceeded to thoroughly enjoy it at every opportunity!

2009- Pregnant with number 3, Asher. That December he threw a curve ball at us at our 20 week ultrasound, where we learned about his heart defect.

2010- Asher is born that April, on my birthday no less! We bravely enter the Heart World. Asher has surgery #1 that May (Taylor's birthday).
We fly to Stanford September 2010 (Jonathan's birthday) for Asher's BIG surgery, #2.   
We make it through it all smiling.
October 2010, we get a BIG surprise- we are pregnant with baby #4 (oops!).  
                                                      We end the year still smiling, though!

Thank you for always taking the time to play and be silly with the kids
 2011- Through it all, we still have A LOT of fun.
We continue to enjoy the beauty of Utah's National Parks.  
 2011 also brought sweet baby Jacob into our lives.
 We still manage to make time for Us-
even going to outdoor concerts in the rain with our sweet new baby boy! Crazy Kids.
Sweet PaPa comforting his little man.
That fall brought surgery #3 for Asher. Thankfully, we were able to stay in Utah.
In 2011 we also decided that our family was COMPLETE, with our four beautiful children.

2012- They year of change! We make the BIG decision to have you go back to school, we sell our house, and take huge leap and move to Washington!  
 We say goodbye to our home of 7 years
 Make the long drive
 And say hello to our new home in Issaquah.

This journey we are on has been amazing so far my love. I cannot imagine having anyone else by my side.

"Dance me to your beauty with a burning violin
Dance me through the panic 'til I'm gathered safely in
Lift me like an olive branch and be my homeward dove
Dance me to the end of love
Dance me to the end of love..."
"Dance me to the wedding now, dance me on and on..."
"Dance me to the children who are asking to be born
Dance me through the curtains that our kisses have outworn
Raise a tent of shelter now, though every thread is torn
Dance me to the end of love"
-Leonard Cohen

Thank you love for being who you are, for loving me through it all. Thank you for being willing to take these crazy risks with me, for being so dedicated, and staying with me through the end. You are truly my partner, and I am so excited to see where the next ten years will take us.

Happy Anniversary Adam

Wednesday, December 5, 2012

THE Meal (a slightly delayed post)

Okay, I am finally getting around to posting about our first Thanksgiving here in Washington. It was pretty great! Since Jacob kept me home from work almost that entire week, I had plenty of time to prepare our meal. And boy, did I prepare a meal! I must admit, I'm a pretty darn good cook. The key is finding great recipes, so... I'm sharing some of mine here. Lucky you!

First up was brining the turkey. Brining is a must for a super juicy, tender, flavorful bird. Here is the recipe I used for my brine :
  • 3 cups Apple Juice Or Apple Cider
  • 2 gallons Cold Water
  • 4 Tablespoons Fresh Rosemary Leaves
  • 5 cloves Garlic, Minced
  • 1-1/2 cup Kosher Salt
  • 2 cups Brown Sugar
  • 3 Tablespoons Peppercorns
  • 5 whole Bay Leaves
  • Peel Of Three Large Oranges
Bring all of the ingredients, except the water, to a boil in a large pot. Allow it to cool (I put mine outside for a couple of hours). Then, put turkey in a brining bag (I got mine at Target, or you can use a CLEAN 5 gallon bucket), add cooled brine mixture, and the 2 gallons of water. Let turkey sit refrigerated for 24 hours (or outside if its cold enough where you live, I put mine in a cooler in the garage so the bears couldn't get it. Seriously, I have bears), then rinse the brine off before roasting the turkey.
 Here is Asher, very curious about my brined turkey.

When it comes to roasting, I just discovered the absolute best way of roasting for a beautiful, moist, evenly cooked bird.

Adjust oven rack to lowest position, and heat oven to 425.  Rub turkey all over with 4 T softened butter. Season with 1 teaspoon salt and 1 teaspoon pepper. Place bird breast side down in roasting pan. (On a V rack if you have one- I didn't and it was fine). Chop 2 onions, 2 carrots, 2 ribs celery. Place vegetables in the pan.  Roast for one hour. Remove from oven. Lower oven to 325. CAREFULLY turn turkey breast side up, emptying drippings from the cavity into the pan in the process. Return to oven and continue to roast about 2 hrs until a thermometer in the thigh reads 175 (my 22 lb bird needed 2 1/2 hours). Remove from oven, transfer to carving board, and allow to rest for 30-40 minutes before carving. Ta da!
 My glorious bird
 Rolls, before they were baked. I totally cheated and used frozen Rhodes rolls, they were awesome.
 Adam's professional carving job on the turkey
 The spread, which included: The turkey, rolls, stuffing (from a box, of course!), green bean casserole (recipe here), candied sweet potato casserole (here), creamy mashed potatoes (here), cranberry sauce AND jelly, olives, and amazing gravy. Appetizers were muddy buddies (a classic!), and a cheese ball. I baked my little heart out, and could have fed an army. Dessert was a store bought pumpkin pie (I'm not that good!); and it didn't even come close to my Grandma Patty's homemade pie. Oh well!

I forgot to mention- Adam has been super sick with this awful cold for about a month. He's been on antibiotics and steroids. Finally Thanksgiving Day he went to Urgent Care again, was put on a different antibiotic, more steroids, and now he is back to his healthy self. I think he just wanted to get out of the house and away from our little monkeys for a couple of peaceful hours!
 Sweet little Jacob-man that night
 Thanksgiving was pretty great. We missed the extended family, but it was nice having a relaxing day with my little family. The day after Thanksgiving, we decorated the house for Christmas and listened to carols. Then, I took Taylor and Jonny to see "Rise of the Guardians" with Jonny's buddy Jake and his mom. Cute movie!
Jon being a silly sticker monster!

I was looking forward to everyone being healthy come Monday. And wouldn't you know it, Jonathan came down with a fever Sunday night. Gaah! Thankfully, my boss is amazing, and I work with only 2 people in a huge office suite, so Jon came to work with me and set up house in the guest office.
He got tired of mixing up his office with the other two, so he created the sign above and taped it to the wall. Cute kid!

He felt better that night, and went back to daycare Tuesday (much to his disappointment, he wanted to go to work with me again!). Life has resumed normalcy since (knock on wood!).

Thursday, November 29, 2012

Just When You Thing You Have Things Under Control...

 Well, rather foolishly, I've been thinking lately that things are going pretty smoothly around here. Life doesn't feel like constant chaos anymore. We have time to just BE. Like watching Arthur Christmas with all the kids on the weekend!

Then- Jacob gets a fever at daycare the Monday before Thanksgiving, and throws a wrench in everything. I have to leave work early, because Adam is in crunch time at school (end of the quarter, finals are next week!).

I was frazzled and stressed, and Papa John's came to the rescue for dinner that night (the on n Issaquah has hot & ready pepperoni pizza's for only $5!).

The Washington State Health Department doesn't allow a child to go to school/daycare until they have 24 hours WITHOUT a fever. So, I took Tuesday off of work also, thinking surely his fever would be gone that day and he could go back to daycare Wednesday. Nope. Still had a fever Tuesday.

So Jacob and I paid a visit to Urgent Care (He is trying desperately to escape the doctor's office in t his pic). I hoped it was an ear infection, because he could start antibiotics and go back to daycare Wednesday still. Nope- couldn't figure out what was wrong. Uuugh. I called in and took Wednesday off of work as well. Goodbye sick days.
On the bright side, Jacob was a really sweet boy while I was home with him. And- Taylor lost her top tooth! She woke up, and it had fallen out in her sleep and was on her tongue.

In other good (okay, pretty stinking AWESEOME) news, Taylor won the Reflections contest at her school! If you have school age kids, you knwo what this is. For those who don't: It is a voluntary art contest, held every year. Each school has one, and those winners move on to the school district, then the state, etc. They have a theme, and you can submit visual art, photography, dance, music, etc.

The theme this year was The Magic of a Moment. Taylor spent a lot of time thinking and planning her artwork. She painted a watercolor blue sky, then used oil pastels to draw the branches of an apple tree. Then she cut out scraps of fabric for the leaves, and for the apples. She wrote a paragraph about how magical it was to spend time with her family this summer, playing in the apple tree, napping under it, and even eating the apples. (Sorry, I don't have a pic, it's on Adam's phone!)

Anyway, she was very proud of it (so was I!) so I matted it (Thank you Mr. Egan for teaching me how important the presentation of your artwork is!), and she dropped it off at school. We anxiously waited weeks to find out, and last Wednesday found out she won for Best Interpretation in the Visual Arts category for her school. Woo Hoo! We go to an Open House at the high school in early January, and then we will find out if she wins for the district (fingers crossed!).

(On a side note- I can't wait to get the painting back, because I robbed the mat from my large family portrait and it looks very odd without it!)

Monday, November 12, 2012

All is Well!

Well, we got up bright and early today, and took the WHOLE family to Seattle Childrens for Asher's cardiologist appointment today. I did not have my thinking cap on when I made his appointment, and didn't realize November 12th was Veterans Day and school AND daycare would be closed. Oops. It's a good thing they have an awesome sibling daycare/playroom at the hospital (although Jacob is too young for it, so we still had wrestle with him during the appointment)!
Here is my big boy getting an EKG done. He was less than thrilled with this, and this was the calmest he was for it. Oh well... hopefully in 6 months at his next appointment, he will understand a little better and won't be so scared of the wires.

Asher had an echocardiogram done today, also. They wanted to check his heart, valves, arteries, etc. and see how they are doing. At Primary Childrens, Asher was always sedated for these (because he is crazy active and wouldn't sit still to save his life). Here at Seattle Childrens, they only sedate if it is absolutely necessary. So, Asher was NOT sedated, and actually did quite well! He was upset at first, he didn't like the gel on his chest, and the wand scared him. But "Cars" and a bubble machine helped. He finally settled down, and I explained to him that she was looking at pictures of the inside of his body on her computer. He thought that was cool, and started looking at the computer screen instead of the movie. I asked him where his heart was, and he showed me (smart boy!), and I told him that the pictures were his heart. I think he understood me; at any rate, it kept him pre-occupied!

So- the appointment went very well. There is a very slight leak in his pulmonary valve, but otherwise no issues. Yay! he will continue to be monitored every 6 months, but no major imaging will be done until he shows symptoms, or the echo shows a problem. Dr. Likes thinks it will likely be years before we need to do any intervention with his heart. YEARS! That sounds so fantastic.

Friday, November 9, 2012

I'm Alive!

I know, I know, it's been a LONG time!
Life is moving along here. We enjoyed a beautiful, mild, long summer in Washington. Adam did stellar for his first quarter of college- he earned a 4.0! Woo-hoo! He's almost done with his second quarter, and is doing quite well again.

I got a job! I started the end of June. I am an administrative assistant for Healthcare Realty (a publicly traded REIT that owns and manages medical properties in 28 states). I assist the asset manager of 5 different medical office buildings in Washington and Oregon. I love it! I work out of our office in Bellevue, in a beautiful, brand-spanking-new medical tower that we manage. It's a great job- I started interviewing for it when we still lived in Utah. I thought it was a long shot, but I kept moving on to the next interview process. I was elated when I got the job- it was my top choice of all the companies I interviewed with.  

Life has been busy, busy. The kids got to school/daycare/pre-school while I work, and Adam goes to school. Our day starts bright and early at 6am, and most days we aren't home until 6pm. But it's worth it, and we are so glad we are here and have this opportunity for Adam to go to school.

Most recently, we enjoyed Halloween:
Jacob was an adorable dragon- all of my kids have worn this costume now!
Asher was a milk-chugging vampire
John was Batman- the costume doubled as his birthday present (in September)

For some reason Taylor's picture won't load- She was a bride. Imagine her in her baptism dress, only with a veil and flowers.

I took the day off of work and went to the daycare Halloween Party, and Taylor's class Halloween Party. Then, I had a meeting with Early Intervention and the Issaquah School District to discuss Asher's transition into the District's therapy program when he turns 3 in April. It's crazy to even think about! He will be in their pre-school, 2 1/2 hours a day, 4 days a week. Speech, feeding, and Occupational therapists will come in on a regular basis to work with him there.

In other news- Asher has his next cardiology appointment Monday! Can't believe it came so fast. Keep your fingers crossed for good results. He seems to be doing well, but you never really know.

That's all for now- I'll post Monday about his appointment.

Monday, June 11, 2012

Taylor's Baptism

Taylor Marie turned 8 the end of May, and chose to be baptised a member of The Church of Jesus Christ of Latter Day Saints. This past Saturday was her baptism; her daddy baptised her, and she wore a dress that I made for  her, from my wedding dress. The weather was very nice, and she and I had fun taking some sweet pictures of her at a park near our church.
 She was a wonderful little model
 She had a great day, and felt very special
 Our cousin who also lives in Washington was able to come to the baptism with her children
 There were also several other church members there, and her teacher at church
 It was nice having people there to support her, since we are SO new to Washington and have very little family here
 We had a nice simple barbecue at our house afterwards
 The best part for the kids: ice cream sundaes
 After our cousin and the kids left, we decided to take advantage of the rest of the nice weather
 We took Taylor to the Deseret Book in Bellevue and let her pick out a gift (she chose a Liahona). Earlier in the day I also gave her the bible I received from my Grandmother when I was baptised.
 After the store, we went to a a beach park in Bellevue
 It was a great little hidden gem, tucked in a neighborhood that has waterfront property on Lake Washington
 It was a great way to round out the day. It was a very special, lovely, and relaxing day. I can't believe my little baby is already 8!