Coming Soon...Heart Cath and New Baby

Turbo update...Ellie will be having her heart cath this Friday. Our whole family has had the stomach flu, so I'm hoping they don't change the date. I'm looking forward to getting some answers on the status of her ticker, but I'm nervous as to what they might find. She doesn't tend to do anything by the book! Also, we will be adopting a baby at the end of April! We are so excited to welcome a new little person into the family chaos and hope that timing works out with whatever Ellie may throw at us. More later. Sleep now!

To Junior High (But Not Beyond)!

It's official...my eighth grader is smarter than I am. I couldn't understand her math homework last night and I had to look up the definition for one of the words in the poem she wrote for an assignment. For those who are interested, the word paladin means "A knight renowned for heroism and chivalry." Sixth grade math is giving me a run for my money too. Sigh...

A Little Drama is Good, Right?

We celebrated Ellie's birthday this year by coming home from Primary's after an unanticipated 5 day stay. She had gone in Friday morning for a minor surgery to remove her adenoids in hopes of solving her sleep apnea problems. During the surgery, her airway shut down and she went into cardiac arrest. We are very grateful for a well prepared medical staff who quickly resuscitated her. They gave her a lot of fluid during this time, which ended up causing some problems in her lungs as she recovered. So, we got to spend some time in the new PICU unit that had been under construction during her last hospital stay. It's quite nice, actually!

After a slow recovery, we have our happy, sassy girl back. She's back to telling us, "NO!", climbing in the pantry, throwing objects down the stairs (the larger, the better), and has discovered what a lovely sound my dishes (yes, plural) make when they are launched onto the tile floor! Unfortunately, she needs oxygen full time to get her bursts of energy. We have daily battles about keeping the oxygen on, but she is learning that it helps her feel better. Having a toddler on a 50 ft. "leash" makes my day interesting to say the least!

We went to Cardiology last week to see how Ellie's heart fared after all the excitement had died down. Her function has decreased a little. It looks like the plan is to try to get through the RSV/flu season and then take a look at her heart in the cath lab. Hopefully she has just developed some extra vessels that can be coiled off to increase her oxygen levels. If not, we're looking at a possible third open heart surgery (the Fontan) as early as March. We're not sure where that puts us with our plans to adopt a baby in the near future. We've had our paperwork done for a couple of months now. Sigh...never a dull moment.

After all is said and done, we're just happy to have our little bundle of attitude still with us! I guess a little drama is good sometimes--it helps me realize how lucky I am to have Ellie in our family. When we left the hospital, the doctor gave us a discharge summary that included a depressing and lengthy list of everything that is wrong with our daughter. Well, there's a lot right with her too. She smiles in spite of her struggles, says thank you without being told, talks up a storm, makes us laugh daily, simply loves us back, and the list goes on....

Lazy Blogger Post

I'm a little short on time these days. Here are a few (very few) photo highlights of our cute girl's baptism, kids' pictures (finally after 2 years), and our amazing Alaska adventure to visit my sister.

Muddy!

Aren't they a little old for this?

Cardiology, ENT, and Catch Up

We made it through another Cardiology visit last week without any big surprises. Phew! Dr. E. thought Ellie's loud breathing sounded more like an upper airway issue than a heart issue. We were sent to ENT for an evaluation of her tonsils and adenoids. On Monday, Ellie had to have a tube/camera combination shoved down her nose yet again to take a look at her throat. She is such a trooper! The ENT found that she has a "moderately large" adenoid. He also found lots of "owies" down her throat caused by reflux. So, here's the problem...the surgery she had in '09 closed the top of her stomach so she wasn't supposed to be able to have acid go into her throat. Multiple doctors have told us that she no longer needed reflux meds because of this. It seemed to me that Ellie was still uncomfortable, but the doctors said she was fine. At least our visit to the ENT confirms one thing: MOMS KNOW BEST!!! Ellie is back on Axid (reflux medication) for 2 months to see if that helps the adenoid issue improve. If not, it's off to surgery we go. If I understood the doctors correctly, there's some risk of sleep apnea and increased pulmonary pressures with any airway obstruction. I'm just hoping that treating the reflux will help my little one eat even better (I'm sure that having little patches of irritation down the back of your throat discourages eating) and sleep better. My husband and I are up with her multiple times at night and will be much more fun to be around if we can sleep through the night!

As much as I enjoy our fun visits with medical professionals, I prefer spending time with family and good friends. The first weekend in June, we went with my husband's family to the bustling metropolis of Altamont, Utah for a fun reunion. We had our own private lake--how cool is that! Edd is the fishing queen! She catches something every time she goes, while everyone else just gets lessons in patience. The rest of the kids went for something that was easier to snag--crawdads! My son begged to eat them, so I aided him and his cousins in the great crawdad murder of the summer. Some said they enjoyed the microscopic pieces of meat we were able to get out of those tiny tails and claws. I don't think I missed out on anything by not having a nibble. My husband said they tasted like dirt. YUCK!

Over Memorial Day weeekend, our family flew to Oregon to visit good friends. Each year, us moms take a 3 day trip to the coast. We leave the children with their fathers knowing it's ok if the kids don't brush their teeth or change their underwear in that short of a time. The dads get better each year (and they really were great to begin with). When we called to check in this time, most of the dads were together (with 15+ children). They had just finished cooking 7 boxes of mac and cheese as part of lunch, and I think there were even some fruits & veggies served! The moms got to enjoy eating at a fun coastal restaurant, walking on the beach, working on baby blankets, visiting the Tillamook cheese factory, and staying up way too late for how old we are!

While we were in Portland, it was important for my oldest to visit the LDS temple. I am amazed that she and 5 other teenagers that don't get to see each other very often would take time to focus on spiritual pursuits and not just on having fun. You don't find friends like these very often!

Firsts!

I have been told that it is time to update my blog. I wonder why? It's only been a couple of months....

We are enjoying some "firsts" around here. Ellie had her first trip on an airplane to attend her uncle's graduation (sitting still for the flight was a challenge). She went swimming and met her newest cousin for the first time. May 10th marked her first year without a hospital stay or surgery. I found her successfully climbing the pantry shelves for the first time a few days ago. Ellie has made it through her first cold (her parents, however, are still recovering from the sleepless nights). She is starting to run and she is learning to pray.

Looking at Ellie, would you guess that she only has half of a heart? Miracles happen! Life with a heart baby is complicated, but it is good.

Ellie is slowly making progress with eating orally. We had to go back on a continuous g-tube feed at night to give her extra calories. Once she started walking well, her weight dropped and she didn't want to eat any more. The dietician explained that Ellie may have not had enough energy to eat because of her heart condition. I would look at my child chasing the poor dog and wonder if that is really true. She seemed to have enough energy to me, but tormenting Rosie might just have been higher on the priority list than being strapped in a high chair and eating something other than chocolate and Pirate Booty (her favorites)! The GI doc started Ellie on an appetite stimulant yesterday, and she has eaten better so far today. I really hope this continues!

So, I updated the blog. I'm good for another two months now, right?