Grumpy

Ellis is doing very well after her surgery but is grumpy and sleepy, as can be expected. Thank you everyone for your prayers. This was a longer one, around 2 hours, so we were plenty anxious by the end of it. If she does great all night we might get to go home tomorrow but if she needs a little more time we may be staying 2 nights or more.
Here's a picture of the sweet baby before surgery in her tiny hospital gown, which would be an adorable piece of clothing if I wasn't so sick of seeing them. Maybe this will be the last one for a while.

Surgery Day

Ellis's surgery will begin at 2:45 today. Please pray for her safety and quick recovery. We will update again this evening if we can to let everyone know how she is doing.

Since it might be a few days before Ellis feels like pictures or videos again, please enjoy this short film on the making of her latest art installation. She was SO serious about organizing and placing the objects I just had to grab the camera. :)

Pool Party

We were able to take Ellis to church again yesterday, and she was a perfect angel. We are so thankful that this is something we can do now that she is able to wear her trach cap for longer periods of time. After church it was time for some fun in the sun. And then the shade.  In this short video you also get to see Ellis's Curious George impression. I think he is officially her favorite cartoon. 

Love love love this pretty dress from Robin Granny!  Ellis is practicing her southern belle poses.

Surgery Update

Ellis's next round of surgery is scheduled for May 31st. We hope and pray this will be her last one for a while. Her ENT surgeon will be opening up her breathing passages some more by removing excess tissue at the back of her tongue and around her larynx, as we discussed after her capping trials. This should be a 2-4 night stay in the hospital. If all goes well, we will return for capping trials six weeks later. We appreciate your prayers for a successful surgery!
Here are a couple more good pictures from the Baby Dedication. And one sweet one of Ellis in her swing showing off her pretty, long legs. She's loving the warm weather!

Robin Granny and Mamma with Greg and Ellis, who wants to dance

Me, Ellis, and Auntie Steph

Baby Dedication

This was a very special Mother's Day! For the first time ever, we were able to take Ellis to church! Sunday was our annual Baby Dedication ceremony, and we are so thankful that Ellis is healthy enough now that she was able to attend. So Ellis, along with 18 other babies, was introduced to the church family and we as her parents took a pledge to raise Ellis in a loving, Christian home. We love our church family and are always overwhelmed by the outpouring of love and encouragement. So many people came over to meet Ellis for the first time and offer a word of support. And we were doubly blessed to have some special family and friends attend as well. Robin Granny, KenPa, Mamma, Granny Janny, Granddaddy, Sheila, Stephanie, Kelly, Randy, Emily, and Ty all made special trips just to be with us. We love you all!
I have to brag on my baby just a little bit here, too. I was fully expecting to have to take Ellis out in the lobby for the remainder of the church service after the dedication was over because she isn't able to go to the nursery like the other babies. But being the sweet baby she is, she sat patiently with us through the entire church service. She wanted to sit on Granny Janny's lap for a while, and we gave her some little books and tiny, quiet toys to look at. And she did just fine! She even kept her trach cap on the whole time. So I hope I'm not jinxing us here, but based on how well she did, I think we will try to take her on a regular basis now. What a joy it will be to be able to be at church as a family, even if we still can't do 100% of the activities we used to. This week we are thanking God again for baby steps!

She really was happy, even though she's making a face here.

With our friend and pastor, Rev. Todd Lester

Children's Garden

Ellis has been wearing her trach cap a few hours a day this week, which is great considering how much she dislikes it. The key seems to be distraction, and we thank our buddy Joe for getting us out of the house and off to somewhere fun. Here are some pictures of our trip to the Children's Garden at the Arboretum. Ellis wore her trach cap the whole time! If you watch the little video you can hear her making some clear vocal sounds, another benefit of capping the trach.
We are looking forward to a visit from Robin Granny, Kenpa, and Great Mamma this weekend. They will be joining us for all the Mother's Day festivities including baby dedication at church. Yea!

We might have to build a straw teepee in the back yard.

Ellis got to help with a paper making demonstration.

Ellis loves her vegetables, as long as they are taller than she is.

Good to Be Home

Ellis is back to her peppy self. She is still practicing with her trach cap during the day, although we haven't done it nearly as much here at home as we did in the hospital. She has figured out how to pull it off and has become quite opinionated on the matter. We are also still doing her Passy-Muir valve as much as she can tolerate, but only during the day. Until her next procedures we will just keep practicing.
Something fun is coming up this weekend! We are going to take Ellis to church for the first time for a baby dedication ceremony on Mother's Day. We are not exactly sure how she will react to being around so many people or up on stage, and we still can't take her to the nursery. But we are determined to make this work and will just take it one step at a time. And we look forward to introducing her for the first time to the members of her church family who have supported and loved us more than we can ever put into words. Soon Ellis will grow to love each one of you as much as we do!

Feeding Spot and the other fishies

Boo

Ellis did great yesterday with her capping trial but after she went to sleep had some problems. She's fine and her doctors immediately stopped the trial and we are being sent home today instead of completing the 48 hours. We will continue to work with her valve during the day at home and she will need to return sometime soon for some more minor surgery to remove tissue narrowing her breathing passages. We can try the capping again once all that is done and healed and her doctor feels she is ready. So even though this capping trial is officially a "fail," we are grateful that she did so well when she was awake, which is a huge improvement over anything we have seen up to this point. We are trying not to get discouraged and know that she is still on the right path. But I suppose we did get our hopes up a bit that she would pass the trials and be on the fast track to getting the trach out. We trust God for his timing and are thankful for all your prayers and words of support.

Slumber Party

In true Ellis fashion, as soon as the sun went down she perked up and was ready to party. We all decided it would be best to wait until the morning to begin capping the trach, so here's hoping she gets a good night's sleep.

Worn out!

The sweet baby did well this morning with her scope. The surgeon saw a little bit of granulated tissue in her trachea, which is common, and removed that while doing the scope. This was not a big deal but Ellis has been uncomfortable and cranky because of it and has finally taken a much needed nap after some Tylenol and fluids. We have been given the approval to start capping trials either tonight or tomorrow morning depending on how she is feeling later this evening. So answered prayers all around today, even that one about getting a room for Ellis. After her procedure we were told we were going to have to stay the PACU (recovery) room indefinitely because there were no open rooms. But at the last second one opened up and now Ellis has a private room
And I don't have to sleep on a guerney tonight in a big room full of screaming kids. Answered prayers indeed.

The Next Big Thing

We loved having Uncle Grant visit this past weekend! Maybe it won't be too long until he lives a little closer and we can see him more often. Ellis did the "uncle" sign a lot and continued asking for him after he left. Good thing we have lots of pictures to show her until next time.

This Thursday we will be taking Ellis for capping trials, which means she will be inpatient for four days most likely. This is the next step toward getting her trach out, but no one can tell us how quickly this might happen. We have learned to be patient and know that this phase might take weeks, months, or years. But one of our favorite nurses reminded us this week how exceptional Ellis is in every way, so she is betting on getting the trach out sooner than later. We appreciate your prayers over these next few days. Ellis is bound to be upset by the capping because we have to teach her how to breathe in a whole new way, again. And hospital stays always wear her out. Us too. I will try to update sometime after the capping trials begin.