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?

The Hunger Games

My husband and I are officially off the "young family" list. Our oldest baby is now a (gasp) teenager! She loves to read. Her favorite book right now is called "The Hunger Games" by Suzanne Collins. Since we have been starving our baby to get her off her feeding tube (before you call Child Protective Services, read the rest of the post), Edd has dubbed Ellie's new feeding regime our version of the Hunger Games.

We are on day 22 of "the games." About a month and a half ago, we fasted as a family that we would be able to get Ellie to eat on her own. She received a priesthood blessing from my hubby and our home teacher and...nothing happened. She didn't even start eating better! Of course, "God helps those who help themselves." So, I felt that I needed to find something to help her. Another heart mommy just happened to be dealing with the same problems that we were (coincidence--I don't think so). She put me in touch with a medical professional in Australia that was helping her baby learn to eat with information sent via email. Mrs. B. got us set up on a program in which we offered Ellie all her food orally, and just tube fed enough to keep her hydrated. The hope was that when Ellie got hungry enough (which she hadn't before because everything she needed was pumped into her), she would eat! It didn't go very well at first and Ellie lost over a pound. Now, just over 3 weeks later, she is drinking about 20 oz. of milk a day from a cup, and is starting to chew and swallow a variety of solid foods! Ellie has gained back a whopping 4 oz. Hopefully that will continue to increase along with the volume of food she eats. Progress is slow, but it is progress! Ellie has not been tube fed for a week and a half. I have to admit that she is surviving on milk, cheese puffs, and chocolate (with some other real food thrown in in rather small amounts). Don't tell her pediatrician! We are grateful for the steps Ellie is making. So, onward and upward (hopefully in Ellie's weight) to day 23...

This free picture collage made with Smilebox

Front teeth and first steps

Big sister finally lost her two top teeth! I love the toothless grin!

Ellie started walking a few days ago. It really tires her out so she doesn't want walk very much. I don't know if this is normal or not. She prefers to be carried everywhere she goes. She sure is cute though! She likes to "help" me vacuum the kitchen floor. She no longer needs her feeding pump during the day. I have been mixing her formula with baby food and using a large syringe to put her food into her g-tube. It takes about 10 minutes for her. I'm so glad she can finally handle a larger amount of food at once! Ellie is still fed continuously via her pump for most of the night. She's hit a bit of a wall with feeding the past couple of days. She's getting her molars, so I hope that's the cause. She will swallow small amounts of food, but a baby just can't live on a few Cheerios, 2 tiny bites of cheese, and a lick or two of a pear. Compared to where she was, though, this is great progress!

Quiet Please!

I took Ellie to the ENT last week. After Dr. Smith spent 5 loooong minutes with a flexible tube shoved down the back of Ellie's throat, he gave me the news: her paralyzed vocal cord is going to stay that way. The nerve has regenerated enough to provide closure with her other vocal cord, but the left vocal cord still will not move. Typically, complete function returns within a year, but of course, Ellie's doing things her way again. It looks like she will have a softer voice for the rest of her life. In a family with four kids, even a slight decrease in the overall noise level is a good thing! However, I have heard her get plenty loud when she doesn't get her way. As long as she is able to talk on the cell phone, I don't think this voice thing will slow her down at all. She's starting too young!

These next 3 pictures are from my birthday trip to San Francisco with my mom and my oldest daughter. My husband planned the trip so I could finally see Wicked. It rained the whole time, but we still had a blast searching for a fortune cookie factory in an obscure alley in Chinatown, eating yummy sourdough bread at Boudin's, riding the trolley, and watching a fabulous play! Thanks KD!

Happy 1st Birthday!

We celebrated Ellie's first birthday a few days ago. Our little birthday girl started out happy when she got her way too pink car seat (fourth children get practical birthday gifts at our place).

Then it was time for cake (fourth children with feeding problems and an overwhelmed mom get cupcakes). Ellie wasn't quite sure about this situation.

She got sticky frosting on her hands and all the happy feelings went away.
Next, we loaded up the family to go see Christmas lights at Thanksgiving point. As soon as we got into the lights, Ellie was so excited that she promptly fell asleep. The end.

Ellie's birthday celebration seemed a little anticlimactic after all that our family has been through during her first year of life. The past few days I have been thinking about all the years we waited for her, her three surgeries & recoveries, her developmental delays & feeding challenges, the long nights spent sleeping (sort of) by her crib, the tears, the prayers, the uncertainty of her future. The emotion that comes as I reflect on her life is surprising to me. It is gratitude. I am so thankful for this little person who turned my life upside down! I am thankful for the love she has brought to our family. I am thankful for the person I am becoming as I care for her. I am thankful to know that no matter what happens, she is a part of our family forever. I could go on and on, but I think I'll go to bed instead! Maybe going to sleep will help me forget that she officially said her first word today. It was "Dada." (So much for all the time I spend with her!) Then, I think about the smile this word brought to her dad's face. Maybe I can continue to be grateful after all...