Monday, November 12, 2007


VACTERL is an acronym for a combination of birth defects. A child with three or more of these birth defects may fall under the VACTERL association. Since Nathan was born with VACTERL, people ask a lot of questions. Here is the rundown:

Vertebral abnormalities: Nathan was not born with typical vertebral abnormalities. Nate was born with a longer than normal spinal cord, but it was not tethered as is common with VACTERL.

Anal atresia: Nathan was born with an imperforate anus because his anus was connected to his prostate. Nate had a colostomy: his intestines were pulled to the surface of his abdomen to dispose of waste into an artificial bag. At one year of age Nate underwent a reconstruction of his anus. Six months later he had a surgery to take down the colostomy and now through a bowel routine will be able to be potty trained as typical, though we have been warned it might be a long process.

Cardiac defects: Nate was born with several holes in his heart, ASD and VSD. They were repaired when he was 8 months old durng open heart bypass surgery. Due to the complications of a weak heart during his first months, Nate developed pulmonary hypertension, high blood pressure in the lungs. Nate wore oxygen full time for almost a year, and now wears oxygen at night.

Tracheoesophageal fistula: Nate was born with a connection, or fistula, between his windpipe and esophagus. Nate has this repaired the morning after he was born.

Esophageal atresia: Kids with the fistula typcially also have esophageal atresia, which creates reflux and other eating problems. As Nate matures he will be able to learn how to manage these issues through dilation of his esophagus, feeding therapy, and medication.

Renal abnormalities: For Natha, this is the most serious of his association. Nate was born with a single displastic kidney. Nate's kidney is weak and unable to pump fluid quickly enough to flush itself well. Over time this created a large ureter, where bacteria was able to grow and urine became slow moving, like a dam in a river, and flushed urine back into his kidney. This is called kidney reflux. Over time the reflux created infections and damaged his kidney. Last year Nate had surgery to taper his ureter and place an internal stent. Together these help create a faster flow of urine to his bladder, decreasing his kidney infections. Since this time Nate's kidney fuction has not worsened. It is anticipated that at some point Nathan will need a kidney transplant. We can do our best to prevent this and increase the fuction of his kidney by feeding Nathan large volumes of fluid and keeping his electrolytes balanced properly. Typically Nathan's kidney functions between 15-30%. Kidney disease creates other abnormalities we have to watch closely with Nathan: poor growth, dental problems, poor development of fine motor skills in the mouth due to lack of appetite and oral stimulation, etc.

Limb abnormalities: Nate was born with pronation and weakness of his feet and ankles that will improve over time through physical therapy and aids such as braces for his feet. Nate's muscles are weak, but are able to be strengthened and simply require extra work.

I wish that was everything, but that is just a brief overview of VACTERL association and Nate's health history. Nate is a tough kid and we love him and are proud of his strength!

Wednesday, November 7, 2007




Lately Eva is surprising me with new adventures every day, so here is an update!

Eva is speaking!
So far Eva has thrilled Ben by refusing to call him "daddy." The other day I asked for Ben and Eva copied me by yelling at the top of her lungs, "BEN!" Sometimes Ben will ask her to call him "daddy" and she will say, "NO." Eva's used two words together for the first time to say, "Don't cry." Eva now happily says this once she has been cheered up to her satisfaction after a fit of crying. One of the girls was trying to get Eva's attention by calling her name and Eva ignored her and then finally said, "What?!" in an exhasperated voice. Eva surprises me all of the time with words I didn't realize she knew since we don't say them all of the time, such as 'door.' I love Eva's little voice! Eva also started singing and dancing in the car when I play music.

Eva is a pack rat!
Eva doesn't really play with toys. She picks up as many as she can hold in both hands and carries them around with her. If Nathan starts to play with something it suddenly becomes irresistable and she takes it from him and toddles away. Eva wanders around the house a lot, too.

Eva accepts no!
Each time we told Eva 'no' she paused, looked at us for a moment, and then cried hysterically. To solve this problem we acted really excited each time Eva paused and cheered, "Good job stopping, Eva!" before she could start crying. Now every time we tell Eva 'no' she stops, looks at us, and starts clapping and smiling before we even praise her!

Eva has separation anxiety!
Eva loves attention. She also like to be in charge. If Eva walks away from Ben or I then it is okay for us to be apart. If Ben or I walk away from Eva, even a couple of steps or to cross a room, she is not happy. Today while I took a shower Eva stood screaming and pulling on the curtain until I finished and picked her up. Although it makes finishing paperwork difficult, I love that Eva loves to be held!

Sunday, November 4, 2007

1. What is the best thing you cooked last week?
I didn't cook much last week, but I did make Zuppa Toscana.

2. If time, money, and babysitting were no object, where would you go and with who?
Scandinavia with Jordan.

3. When was the last time you cried?
When I puked this morning a couple of tears squeezed out from all of the pressure.

4. Five things you were doing this month ten years ago:
On my mission; working in the town of Moss, which smelled like pumpkins; street contacting and talking to people - the usual missionary life.

5. Five things on your to do list today:
I only have one thing to do on my to do list: lay in bed because I am sick. Maybe later I'll play Guitar Hero if I am feeling better.

6. Five favorite snacks:
Diet Coke, Goldfish, pretzels, chips and french onion dip, fruit roll ups

7. Five bad habits:
Procrastinating, staying up too late, drinking diet coke and eating too much fast food, and playing video games too much.

8. Five favorite foods:
Enchiladas, steak, Arby's, Zuppa Toscana, buffalo wings

9. Five places I've been:
Cozumel
Norway
Florida
Hawaii
8 of the worst hours of my life in Paris

10. Five favorite memories:
Nathan and Eva being born; getting married to Jordan; coming home from my mission; taking Nathan home from the hospital; first semester at BYU
Shelley, you are great - I LOVE these. I like reading other people's answers. I am going to interview Ben and make him do it, too.

1. What is the best thing you cooked last week?
I did not cook a single thing last week. But, the best food I ate last week was actually hospital food - PCMC makes a pretty good Halloween carmel apple!

2. If babysitting and money were no object, where would you go?
On a CRUISE! But I am not going to elaborate because it will not being happening anytime soon and then I will just want it more . . .

3. When was the last time you cried?
I don't like this question . . . according to Ben I don't like to be vulnerable.

4. Five things you were doing this month 10 years ago:
I actually have a pretty funny story! When I was 15 there was a weekend stake youth retreat around Halloween time. I was grounded for the weekend, but not from the church activity. I had this great idea to cut out on the dance to hang out with this guy I liked, a non-member. So, his MOM came and picked me up (we were 15 - we couldn't drive) and dropped us off downtown. It was my first "real date," where the guy paid for dinner and everything. Keep in mind my parents are letter of the law kind of people and I was not allowed to date until I was 16. While we were gone my dad came to bring me something at the stake center and I was not there. One of the other youth said I left with this guy, and my parents actually tracked down his parents, whom they had never met, called his mom, and had a chat. So, when his mom picked us up, I got to ride home with the boy (he did not know I was not allowed to date until I was 16 or that I would get into trouble for leaving the dance) and his mom in a very uncomfortable silence. Don't worry, though - he thought it was pretty hilarious and flirted/teased me about it for months. His mom was very sweet and just very concerned. I was humiliated. Later, my parents invited his parents over for dinner. It was fabulously cool. Ten years ago I was also really into Foo Fighters, Sarah McLaughlan, and Third Eye Blind; I was skipping study hall to go to Haag Lake every Friday with my friends; my favorite book was "Good Night, Gracie," which I haven't read since and would like to track down to see why I liked it so much; I participated in piano and vocal competitions and performances.

5. Five things on your to-do list:
Since it is Sunday, my list is pretty short: Take Nathan up to PCMC to have his NJ tube placed since he pulled it out in the middle of the night, clean up the apartment, start my laundry, go to church (if Ben stops throwing up by then so he can watch the kids, who are also throwing up), and then do anything that does not involve work.

6. Five favorite snacks:
Kettle corn, Reese's Fast Break and milk, Jamba Juice, granola (the kind in the green box), and frozen peach slices.

7. Five bad habits:
Checking my work e-mail too many times on my day off, putting my kids to bed in t-shirts instead of pajamas (you would too if you had to fight Eva to get pants on), eating in bed, watching too much TV, avoiding things.

8. Five favorite foods:
Japanese chicken wings, roasted tomato soup from Paradise Bakery, Jamba Juice and jalepeno bread, fajitas, and Costco chicken and monterey jack chimichangas.

9. Five places I've been:
Palmyra, New York
British Columbia and Toronto, Canada
Florida
Philadelphia
Caribbean

10. Five favorite memories:
I was really happy when I was 17; going to haunted houses with Ben and on lots of dates and just having fun and laughing at stupid things; moving into our house at Alpine with clean, new carpet; Nathan and Eva's first laughs; anytime Ben, the kids, and I play together.

Sunday, October 7, 2007

Video Posting Mania

Time to Post some cute videos for all the girls that have gone on and my sister in Israel...













Monday, October 1, 2007

Why sometimes I feel like an old man

It's funny, I just finished talking with one of my girls that has moved on, and it is so scary sometimes for me to look at the myspace or facebook pages. It's funny but it also makes me fear the day that Nathan and Eva become old enough to get into the kind of trouble that takes more than a kiss on the cheek or time out to fix. I think about how helpless I feel sometimes in this job. Teaching the girls about right and wrong, choices and consequences, and about how to get what they want from life is great. The hard part is they get to make the choices, and that is the scary part.
I see my former girls on their websites, with their pictures that sometimes make me think about all the conversations I had with them about respecting themselves enough to wear modest clothes, and about how many times we talked about how alchohol makes people acts like idiots.
I see the conversations they have with each other on the social websites, and the words and way they talk to each other and it makes me want to have them in my home again, so that I can tell them the right thing to do. But as my more rational side takes over, I have to face the hardest truth of parenthood I've discovered. You can't make kids great, you can't make them successfull, you can't make the choices for them. You can do everything you can to make it easier and make the choices and consequences clear, and be consistent, but at the end of the day you need them to make the choice, and let them live with the consequences.