Precious Ellie

Our precious Ellie returned to our Father in Heaven early this morning. Our hearts are broken and there is a hole in our lives that will never be filled. We find comfort in knowing our family is eternal and we will be with her again.

GJ tube vs G tube

A year ago Ellie had surgery to have a Nissen Fundoplication (I'll call it a Fundo for short) and a Gastrostomy Tube (G-tube) placed. I explained all about these in this post. At the end of June Ellie started vomiting after her feedings. This was concerning because Ellie is not supposed to be able to vomit after having a Fundo. We know that she does not protect her airway and aspirates when she swallows so we can assume that she is unable to protect her airway and is at risk for aspirating every time she vomits or spits up, hence the reason we did the fundo in the first place. Her GI doctor ordered some tests that confirmed that her fundo had broken down, or come undone. We made some changes to her feedings to account for this and tried to prevent further vomiting but ultimately we knew we needed a long term solution. So two weeks ago I met with a surgeon about redoing the fundo, which is a much more complicated surgery then doing a fundo the first time. With him not familiar with Ellie or her history and not understanding trisomy 4p and CdLS very well (they both characteristically have extremely severe reflux that does not resolve with age) he didn't feel like it was necessary to redo the fundo. I was in tears as I tried to explain that my greatest fear was that she would start aspirating again and we would be right back where we started: on oxygen and with damaged lungs. He wanted to wait and watch because other than a little throw up she seemed to be doing fine and it might not even be a problem having it undone. I disagreed and wanted a second opinion. Fast forward a week and Ellie got sick with the rest of our family. She was on extra oxygen and had increased coughing and secretions like she always does when sick. Only now, anytime she coughed too hard she would vomit. After vomiting a couple of times it became apparent that she had aspirated because her respiratory status deteriorated quickly. Soon she was requiring more oxygen then our machines are capable of at home and she was showing signs of respiratory distress. She was admitted to the hospital with what was confirmed to be an aspiration pneumonia. I hate to say I told you so, but......

They started her on antibiotics and we hoped to be able to wean her oxygen down and get her home quickly. One day turned to two, which turned to three and then four and now we are on day 5 with very little progress on weaning her oxygen (still at 50% FiO2 when baseline is room air during the day for all you nurses out there). It has been decided that she definitely needs to have the fundo redone, but her lungs are not in good enough shape to go under anesthesia right now, so the solution is to put in a GJ tube to stop the vomiting/aspirating while we give her lungs time to heal before taking her to surgery in 6 weeks or so. So what is a GJ-tube and how is it different from a G-tube?

A GJ-tube, short for Gastric-Jejunal feeding tube, goes through the abdomen into the stomach in the exact same way as a G-tube. In Ellie's case since she already had a g-tube they were able to put it in through the same stoma, or site. The difference is that while a G-tube ends on the other side of the stomach wall and feeds directly into the stomach, a GJ tube has a longer tube that is advanced past the stomach into the second portion of the small intestines, called the jejunum.

This has to be placed either with a scope under anesthesia or in interventional radiology to verify correct placement.

Ellie being prepped in Interventional Radiology

The GJ-button is similar to the G-button, but is slightly bigger since it has two ports: the Gastric port which empties into the stomach and the Jejunal port which empties into the intestines. The G-port is used for giving medications (since most medications are absorbed in the stomach) as well as decompressing or venting the stomach. The J-port is what Ellie's food will run through.

While caring for and using a GJ-tube is similar to a G-tube here are some of the differences. You can give bolus feedings (giving several ounces over a short period of time as if they were drinking a bottle) through a g-tube, but with a GJ-tube you must give slow continuous feeds. This means Ellie now has to be hooked up to her feeding bag 24 hours a day. While we have been able to replace her g-button as needed at home, a GJ requires a special procedure for placement. So if it becomes clotted (which they are prone to do) or dislodged it means going to the hospital to have it replaced. While a GJ clearly has it's disadvantages, the benefit of having it is that we are bypassing the stomach, therefore keeping it empty, so that Ellie won't be refluxing and vomiting her food. Some people chose to use a GJ tube as a permanent solution, but after a lot of thought and consideration we still feel very strongly that it is going to be best for Ellie if we redo her fundo.  So if all goes according to plan (which it never does) then we will get Ellie over this pneumonia and get her lungs in tip top shape for surgery in 6 weeks. After the fundo is redone then they will change the GJ tube back out for a G tube and we will hopefully get back to where we were before this whole fiasco started. In the mean time we just hope we can get her oxygen levels down so we can go home.

Little Miss Hercules

There must be something in the water out here in Nebraska because Ellie has had a surge in strength and development since moving here. She may have started sitting 6 months ago, but Ellie is finally a stable enough sitter that we can put her down with some toys and she can sit and play independently without us having to be right by her side to constantly catch her from tipping over. She is a proficient roller and rolls all around the room to get to whatever she wants. She has begun pushing up on her arms a little more when lying on her stomach which has lead to her showing signs of an early army crawl as she reaches out and rolls on her side and then reaches out with her other arm and rolls to her other side and repeats over and over to inch her way toward what she wants. Most exciting is she has finally started putting weight on her legs when we hold her up. It is so fun watching her exploding with curiosity as she is able to move around and explore more. Although her path is slow and steady, we can't help but believe that one day she will learn to crawl and walk.

Back to School

Another summer is officially in the record books and what an amazing summer it was. Spending the entire summer at home with all four of my kiddos was both wonderful and exhausting. We accomplished a lot of goals we set for the summer, but by far the thing that brought me the most satisfaction was watching our little family grow closer together and learn to lean on each other for support and friendship. This summer has held so many precious memories of my children loving and caring for one another. This year I am especially sad to see the lazy days of summer end because I am loosing not one but two kids to a full school day (8:30am -3:45pm). While I am completely heartbroken that half day kindergarten is not an option out here, I also know that Brynn is going to love going to school all day and will do great. I have been blown away by the caliber of our new elementary school and am very confident that my kids are going to do amazing things this year. We really couldn't have moved in at a better time since they just redid the school boundaries over the summer. The changes moved all of our development to a different school then they had previously been assigned to, which landed us in the school that was our top choice while house hunting, and made it so all of our neighbors were going to be the "new kids" right along side Mason and Brynn. Once again, it just confirms to me that we landed exactly where we are supposed to be.

Without further ado I introduce the two newest Rohwer Rockets!

Brynn the Kindergartener!

 Mason the second grader!

 

Mason and Brynn are super excited to be riding a bus to school this year. The bus stop is right in front of our house which makes the whole situation ideal and is going to make my life so much easier. The first day I watched them get on the bus, waved good-bye, then, like a good helicopter mom, hopped in the car and followed the bus to school to make sure they made it to their classes okay.

At the end of school they had all of the students who ride the bus meet together and line up according to which bus they ride so they could make sure everyone got on the correct bus. This turned into a stressful situation when it became apparent that their bus lists were incomplete and they worked on sorting out which bus everyone was supposed to be on. Thank goodness I had drilled into Mason which bus he road so he was able to confidently tell the teachers where he needed to be. The kindergarteners were not at this gathering since their teacher walks them to the buses separately. When they told Mason's group to head out to the bus he admitted to getting 'a little teary' and telling the teacher, "I cannot find my little sister and I will not leave without her." So the sweet teacher took his hand and told him they would find his sister. She walked with him until they met up with the kindergarteners walking out. Once Mason saw Brynn he felt much better. When Mason told me this story my heart almost burst. I am so proud of what an amazing older brother he is. Then as a little icing on the cake I pulled out a paper they had done in school where they had to write things that made them feel different emotions. His answer to what makes him feel happy was, "seeing my sister at recess."

Miles spent the first few days walking around the house asking, "where are the kids?" every 10 minutes and still runs screaming to the door when they get home every day. It's going to take some getting used to not having his best buddies around. But something tells me it won't take him long to realize only having 2 kids at home has it's advantages, too.

The first week of school is behind us and we are well into our second week and everything has been smooth sailing. Both kids are loving school, making friends, and learning a lot. It is going to be a great year!!

Family for the 4th

Lincoln, Lauren, Miles, Preston, Avely, Brynn, Kayla, Mason, and Ellie.

The 4th of July is my absolute favorite holiday. It is smack dab in the middle of Summer, there are always fun activities going on, and it is filled with oodles of family and friend time. What's not to love about it? This year was very different without our early morning Freedom Run, Provo grand parade, and the Hale candy drop to fill our day, but we found out first hand that Omaha is a pretty fun place to be for the 4th. We were thrilled when Vance and Lisa decided to make the 6 hour drive and come spend the weekend with us. It got even better when last minute Jeremy and Janessa, who had moved back to Minnesota only the week before, decided to make the trip as well. This is the group of family we have seen the least of over the last few years and it was wonderful to see them all again and meet some of our nieces and nephews for the first time in person. It made my heart so happy to watch my kids playing with their cousins and loving every second of it. It was so fun catching up with Vance and Lisa and Jeremy and Janessa and hearing about everyone's new adventures in life.

First up was the College World Series home run derby followed by going down on the field and watching a spectacular firework show above the stadium. Lisa and I stayed home with the little ones who were too little to appreciate the baseball, loud noises, and late night. Everyone else went and had a great time. It was an action packed game with 115 home runs hit. Jeremy even managed to snag a ball.

The next day we headed to a park for lunch.

 Then home for a water party in the backyard.

 We wouldn't be very good Nebraskans without Corn on the Cob at our BBQ.

 That night we were introduced to how Omaha does fireworks on the Fourth. Everything is legal in Omaha and we had been told it gets pretty crazy, but nothing could have prepared us for the 360 degrees of wall shaking fireworks that would be going off all night. It started early in the week and every night the firework shows got bigger and lasted longer. By the night of the Fourth there was a constant rumble and you could see fireworks going off as far as your eyes could see in every direction. It was a far cry from Utah's firework restricted Cul-de-sac of fire. Miles ran up and down the sidewalk waving his American flag saying "Fireworks are AWE-SOME!" over and over. Ellie only lasted outside for a few minutes before the smoke cloud was more than I was comfortable with her breathing straight into her lungs (remember she doesn't have a nose and mouth to filter like we do). She miraculously went to bed and slept through the chaos. It was definitely a 4th of July to remember.

The next day we braved the crowds and headed to where else than...the Zoo!

 We let the girls have a cousin sleepover on their last night together.

We are so grateful to the Murrays and Reeses for taking the time and effort to come down and visit us. It was seriously the highlight of our summer spending time with all of them. We are so glad that we live a reasonable distance from them now and can't wait to go visit them soon.

Visitors from Home

The week after my mom left in June, we were lucky enough to have a few more visitors come. Scott's dad and his two younger brothers, Austin and Tanner, stopped by for a few days during their road trip through the Midwest visiting all of Scott's siblings that live out this way. Even though it had only been a few weeks since we had seen them, it was wonderful seeing familiar faces that brought a piece of home with them. We tried to show them a good time so that hopefully they will want to come back and visit again soon. Their first day with us we had an adventurous trip to the zoo where Austin got ahead of us in an exhibit and ended up lost for the next 5 or so hours. It was a great chance for me to review with my kids what to do if you get lost at the zoo or any other place we go. Austin was found and other than being hungry and tired from walking around all day, he was no worse for the wear. That night Scott, Mike, Austin, and Tanner were able to go to game one of College World Series championship series.  

The next day Mike and the boys drove up to Minneapolis to visit Scott's brother Vance and sister Janessa who live up there. After playing there for a few days, (and Austin getting lost in the Mall of America) they stopped by again on their way home. 

It wouldn't be a visit from Mike, the game master, without a few good game nights. We played some classics games like Settlers of Catan and Ticket to Ride, but Mike also introduced us to what is sure to be a new favorite, Seven Wonders. On the morning before they headed back home we went to the Mormon Trail Visitor Center that is located next to the LDS Winter Quarters temple. We joked with Austin that we were going to make him wear Miles' doggy backpack leash so he wouldn't get lost.

Our good looking pioneer family.

We are so glad that Mike and the boys could come for a visit. We loved having them come and stay with us, even if just for a few days.

Omaha Fun

Anytime we are getting in the car to leave somewhere, Miles very thoughtfully says, "I have a good time at (fill in where we have been eg: the zoo, my friend's house, the store)". The best part is when he says it even when he didn't actually have a good time like when he cries all through nursery and as we are leaving church he will say between sobs, "Miles had (sniff, sniff) a good time (sniff, sniff) at nursery." Miles has had plenty of opportunities to "have a good time" as we have been out and about exploring this summer. Here are some of our favorite things we found to do in Omaha.

Henry Doorly Zoo

We heard A LOT about the zoo before moving to Omaha. The zoo is kind of a big deal out here and people are very proud of it. After being told by countless people we had to get a zoo membership we decided it better be one of our first stops. So while my mom was out here in June we took our first Omaha outing to the zoo. It was pretty awesome and did not disappoint. We have been back to the zoo several times throughout the summer, checking out new exhibits each time, and we still haven't seen the entire thing. My kids are all such animal lovers that the zoo never gets old so I'm sure we will be continue to be frequent visitors there.

Swimming

With Brynn still learning how to swim, Miles being...well, Miles, and us having to be so careful with Ellie around water with her trach, I was not very confident I would be able to take all four kids to the pool by myself this summer. But what is summer without swimming? We did a trial run while my mom out was out here and checked out the local pool. As it turns out, Ellie absolutely LOVES water! She gets so happy and animated and goes crazy splashing. It was no surprise that the other kids loved it as well. I couldn't deny my kiddos their summer swimming so I took a deep breath, bought a punch pass, and braved as many outings to the pool as we could. I got a lot of funny looks and "you've sure got your hands full" comments whenever we went (or anytime we leave the house really), but most of the time it wasn't half as bad as I thought it would be. The cool thing about the pools out here is they are all Omaha public pools and the punch pass will get you into any of the pools. So we got to pool hop all summer and see what each pool had to offer. Our favorite turned out to be Zorinsky Pool which happened to also be the closest and most convenient one. Brynn and Mason also took swimming lessons and each made a lot of progress. Brynn is well on her way to being an independent swimmer and Mason continued to improve his strokes.

Children's Museum

As mentioned before we checked out the children's museum on Brynn's birthday and this was my first outing with all four kiddos by myself. I was definitely exhausted by the end, but overall it went really well and gave me confidence that we would be able to get out more than I thought we would. Mason's favorite things were the cool art area they have that has pretty much every art medium you could think of for kids to explore and create with and panning for fossils in the dinosaur exhibit. Brynn loved the grocery store, bank, and children's hospital play areas. Miles loved the dinosaur exhibit. I'm pretty sure he thought all of the dinosaurs were real. Ellie was happy as can be in the bjorn the entire time. By this point in the summer she was starting to like our outings just as much as the other kids. 

Panning for fossils.

 Miles described this part by saying, "I cwimbed up on a twampowine and the dinosaur wooked at me and talked to me." Translation: He climbed up into this little cage that apparently reminds him of a trampoline and the dinosaur's head would turn and look at him and then it's mouth would open and it would roar.

Cute Ellie and goofy looking mom checking out the dinos.

Brynn was sure that Ellie was dying to go down this slide.

Hydrant Party

A fun activity the fire department puts on all summer are hydrant parties. They close down a neighborhood street, hook a sprinkler hose up to the fire hydrant, and let the kids run through and play in the water as it floods the street. They do these parties twice a day, three days a week at all different locations. It's obvious I come from a state where drought warnings and water conservation are constantly preached because it was stressing me out how much water they were wasting. I had to keep reminding myself we no longer live in the desert. It was the perfect activity for a hot summer day.

College World Series

Every June Omaha is taken over by the college world series. It's a pretty big deal and proved to be a lot of fun for our baseball loving family. Scott took Mason and Brynn to a game and they both had a blast!

Union Pacific Homeplate Family Days

During the college world series Union Pacific brings in a bunch of classic train cars that have a railroad museum inside of them and parks them right outside of Ameritrade park for people to go through. One day they hosted an employee family party there full of fun baseball and railroad activities. It was a fun afternoon for the kids to get introduced to the company Scott is working for.

Water parties

The kid's favorite activity of the summer turned out to be water parties in the backyard. Rarely a day went by that the kiddos didn't suit up and run through the sprinkler, slip and slide down the hill in our backyard, and turn our playhouse slide into our own private water slide. Our grass now has a permanent imprint that is the shape of our pool at the bottom of the slide. It was the perfect way to keep cool on the hot humid days.

The Slides

Our friends introduced us to these awesome slides that are downtown and just down the street from Scott's office. They are seriously the fastest, craziest slides. The kids get air over the bumps and without someone to stop them at the bottom their little bodies usually launch right off the end. Miles won't even go on it by himself because he gets so thrown around. As if that isn't enough, a lot of people bring wax paper to ride down on to make it even faster. The kids love these slides and insist we stop and play anytime we go downtown.

White Hawk Lake

There are a lot of little lakes/ponds scattered around Omaha. We happen to have a cute little one in the development right next to ours that also has a playground that we like to walk to. It's not a long walk, but one thing we have learned about Omaha is there is no such thing as a flat road. Every road is either going up a hill or down a hill. It makes for pretty rigorous bike rides for the kids, but it was fun to watch how their strength and endurance improved over the summer. 

There is a quick glimpse of some of our favorite activities this summer.