Photos and Home!

 In CICU

 Look at the blue number--this is her oxygen saturation level. We are used to seeing high 70's and low 80's on that screen. Now she is in the low 90's (almost normal)! Happy dance!

 Hanging out with her stuffed friends

Just a short time after chest tubes came out, she was a different kid--crazy driver though!

HOME!!! Back to an oxygen "leash" full time for a little while.

We came home Sunday afternoon--can you believe it? We had to go in for chest x-rays Tuesday and today to make sure her pleural effusions weren't getting any worse. Things look fine so no more hospital visits until we go to post-op clinic next Wednesday. Yay! We are amazed at her recovery! Now we focus on getting her off oxygen and getting her to eat again. Every day is better though! The best part is that I don't have to update my blog for awhile :) !!!

Her Way

So I was planning on going home this afternoon. Ellie is liking this unlimited movie thing and has decided to stay a couple of days longer. Her oxygen sats have started dropping and her lungs are a bit "wet." On the positive side she ditched the chest tubes yesterday and has started getting her appetite back. She eats enough to feed an ant or two but we will take what we can get. Her happy personality is coming back too. I wish I knew how to post pictures from my phone. Oh well!

Floored!

For the first time in Ellie history, she is out of CICU just 1 day after surgery! To our surprise, they moved her to the floor yesterday evening. One of 3 chest tubes came out this afternoon and she went for her first walk (only about 10 ft but that was all she could handle). I'm allowing myself to hope that she might actually get to go home days and not weeks after surgery. Fingers crossed!

Doing Great!

Ellie is doing the best she ever has following surgery! She had a bit of bleeding, low blood pressure, and major grumpiness last night. Can't say I blame her! She's tried a couple of times to get out of bed to get out of here. The nurse gave her chocolate ice cream for breakfast. That was a hit! There is talk of moving to the floor this afternoon. Hooray!

Finished!

Everything went as planned. The surgeon was hoping to have Ellie off the ventilator before she leaves the OR. What a relief!

Update #2

Ellie is finally on bypass. The surgeon said he would take his time getting through all the scar tissue and he did. More waiting...

Update #1

Surgery is underway! Yikes! It just doesn't get easier to send her away with the anesthesiologist! I have to say that we sent her away happy. The anesthesiologist had her talking up a storm. I'm sure the only way they got her quiet was to put her to sleep. I was really impressed with this guy. We met with the surgeon as well and know that Ellie is in very good hands.

Pre-op

We are a go for surgery #3 tomorrow! We spent a few hours at Primary's getting all the preliminary labs and chest x-ray done. Ellie was a trooper! She didn't even flinch when they poked her to draw her blood. She thought getting the urine sample was a fun activity (they told her to pee in a plastic "hat" and then I got to pour it into the collection jar). She told me that there would be no more wearing that hat after she was done! Ellie seems genuinely pleased to be going in for surgery tomorrow. Strange child. Won't tomorrow be a rude awakening! We have tried to explain what's happening and have taken her to the pre-surgery class to help her know what to expect. She simply lives in the moment. Surgery is at 8:30 am tomorrow. Here we go...

Bye Bye Binkie

So, we decided that since Ellie is over 3, it was time to say goodbye to her longtime friend, the binkie. Ellie and the bink weren't always on good terms--we had to push and push to get her to overcome an oral aversion from severe reflux and having so many tubes in her mouth. We used the binkie when she was tiny to help get her used to having something in her mouth that didn't cause discomfort. She wasn't a big fan until she was over 4 months old. Then, then she and the binkie were inseparable! 

Some friends suggested taking her to choose a stuffed animal and then have her "pay" with her binkie. Then, when she needed comfort at bedtime, she could snuggle with her new toy.  She really wanted a pink bear from Build-A-Bear but I dreaded taking her to a germ-infested mall. She had been talking about this bear for weeks, so we headed out at a time when I hoped the mall would be less busy. We lucked out and ended up being the only ones in the store--phew! The lady that helped us was so cute! She suggested that Ellie put her binkie inside the bear with the stuffing. My first thought was that it would be a great idea until Ellie got so desperate for her bink that she got out the scissors for some emergency surgery. But, Ellie was sold. We left the store with "Bubbie" (not sure where she got that one) and a very happy girl! Bubbie did everything with us for the rest of the day. However, when it was time for sleep things changed drastically. First, Ellie tried to rip the poor bear's head off to get to the bink. Next, she tossed Bubbie to the floor with dramatic flourish! Then she cried and cried. About a half hour later, she told me to put Bubbie in the doll cradle on the floor (without a blanket though) and she was done. She went to sleep and hasn't asked for her binkie since. Phew! Now we have survived potty training and binkie removal successfully. Bring on the Fontan later this year! 

This is "Bubbie" and a happy girl 

Reality hits--notice Bubbie in the bottom corner of the photo

For Becky

So all in favor of Becky taking over.... Thanks, Sis! You do a much better job than I do! So, here's a token photo at least. Isn't Miss L beautiful? We have an amazing birth mom to thank for that! Our little one is growing up too fast!

Update on the Dummers

This is Shannon's sister Becky. I have officially hacked her blog. I keep telling my sister that she needs to post what is happening on her blog so that her friends and family can be up to date. She has not listened to the wise advice of her younger sister! So I am doing it for her.

The Dummer's finally got their perfect baby. After two failed adoptions they were blessed with Elizabeth Marisa (Lizzy) who was born at the end of September. She is amazing and fits right in the Dummer clan. Shannon and Kevin were able to take a mini vacation to California to pick her up. They were able to do this because of Shannon's amazing sister who came to watch the other kids (oh wait, that's me!) J/K We were all very excited to meet Lizzy, especially Ellie! Ellie informed us all that Lizzy is her baby sister and no one else could hold her. The Dummer family is complete, unless I can talk my sister into adopting one more for me to hold!

Now on to the next great news! Ellie had her heart echo done in November. We (or I should say I) was thinking that her next open heart surgery would be in March. I am happy to tell you all that I was wrong. Her heart looks amazing!!! There has not been any real significant changes since her last echo was done. Great news!!!! The cardiologist is going to try to postpone surgery until late summer or early fall! Also, Ellie is no longer tube fed. She is a big fan of 5 guy burgers and fries. I guess that saying no news is good news applies to the Dummer family.

Check back frequently because I now have full access to the Dummer blog and will update it! Shannon picks sleep over blogging. I don't blame her. She is an amazing mom to her 5 kids! Hopefully she can get some sleep soon! Love you Sis!

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?

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!