The Progress We've Waited For!

Hi everyone!

First of all, I just wanted to say how thankful I am for all of you. Matt and I have a lot of "pinch me" moments when we think of all of you and how you have prayed for our family so diligently. There have definitely been days where we have felt like didn't have any words to pray and you all have interceded for us, so thank you!

Since the last post, Ella has really started to show us her little personality. It has been such a HUGE JOY for us to witness. She is so much more interactive and it has been the progress that we have hoped for, for so long. As I'm typing this, she is kicking her feet, grabbing her toes (with her left hand only at this point), smiling at her daddy, checking on the football game that's on TV to make sure Matt's team is winning, and waving her hand around. (see video below!!) She is seriously obsessed with Matt. It's so cute, she's definitely a daddy's girl!!! She has even been turning onto her side, trying to roll over! This kind of freaks me out because if she does roll over, her arms aren't quite strong enough to hold her up so the trach would jab her in the throat if she rolled all the way onto her tummy. But I guess if it happens we will learn how to help her build the strength so it's not so uncomfortable! It's pretty exciting watching her gain all of these new "tricks".

We have had a cardiologist appointment and a GI appointment. The cardiologist appointment went really well and Ella was just smiling away at Dr. Hill. This was his first time seeing her so smiley and playing with her toys (or paper on the table) and I think he was stoked to see her so happy and acting more like a little girl! It had been a month since we last saw Dr. Hill and a lot of social/physical development has occurred since then, before she would just lay on the table and look around. This time she wouldn't stop kicking around, playing, and smiling. It was so cute seeing her interact with him. There wasn't much to say at that appointment other than it seemed like her liver has gotten less swollen and we don't need to do echocardiograms each time now! These are great things! She is getting stronger and more stable! Yippee!

At the GI appointment, we switched her back to a different kind of formula that she seemed to tolerate a little more and came up with a plan if she continues to throw up. Well, the weekend passed and she continued to throw up 2-4 times each day. So we now have an appointment to go get a Barium swallow x-ray done this Wednesday (Jan. 23rd) in Sacramento. This will let us know if there is some sort of issue in her digestive tract that is making her vomit. We've noticed that there have been a couple of yellow colored vomits which I am praying is not bile. We shall see! We are also going to be giving her Pepsid in hopes to help with the acidity in her tummy. I am praying for answers from this x-ray!

On a different note, going back to work has been good but has brought about it's own challenges. I don't have the time after school like I am used to, to get stuff done because I need to get home to relieve the nurse by 4pm. I used to work past 5 or 6 every work night so I didn't have to bring home any grading, but I'm not able to do that so my backpack is full of papers to do at home now! I have tried to combat this by going into work early in the morning but have found I am exhausted at night and have fallen asleep on the couch a couple of times! Thursday night I fell asleep around 8 and didn't even have enough energy to do Ella's trach change so we were delayed a day in that! Matt has been amazing through it all though and has picked up so much of the slack. Like I've said before, he is inredible. He is such a selfless dad. I am one blessed girl!

Off to do Ella's trach ties now while Eli naps! Happy Sunday everyone!

Love,
Jillian

PS. Ella is up to about 6-8 hours per day of sprinting off the vent! Please pray for this to pick up speed so we can get rid of the VENT!

Back to School

Hi everyone!

Tomorrow is my first day back to work since February 28th of last year. So crazy to think that I was off for ten months. I have gone into the classroom a few times, some with kids, some without and I am actually really excited to be back. I think that once I leave our house tomorrow I may get a little sad, but I know that it will also be good for me to get out of the house a bit. Having Ella's condition in my face constantly is really tough. The reality of the ventilator and condition of her heart can get really sad and I think having two or three days a week where my brain is distracted by work will be a good thing.

Just a little update on Ella... She is definitely progressing physically and can grab things and move a lot more than she could when we left the hospital. The main concern we have right now is the continued vomiting. I can count on her throwing up on me almost every time that I hold her so it makes me nervous to do so. I don't want to make her feel nauseous or uncomfortable so I feel like I can't hold her as much as I want to. We have a GI appointment to change out her Gtube and to figure out what's going on in her little body. Yesterday she threw up a yellow vomit which we have never seen before. I am worried it is bile. Praying that we get some answers on Friday. (I will normally work Thursday and Fridays and every other Monday, but my job share partner switched with me so I could make it to this appointment... Don't know what I'd do without her!!!💜) We have have to go to the hospital and get Ella's digestive tract scoped... 😞  In other news! She has been sprinting off the vent again! Yippee! The progress is definitely slower than I would like, but I am trying to be patient! I have decided to look for the good in the vent: 1. We are able to hear her breathing in the middle of the night and quickly wake up when we hear the pattern shift when we are on "Ella duty" 2. I think it has kept her from getting sick this season because it has a filter 3. It's keeping her alive and breathing, which is a pretty big deal 😉.

Please pray for the vomiting to cease and for some answers on Friday.

Here are some photos from recently!

Eli got fake tattoos for Christmas and wanted Ella to have one too. She's a girl so she had to have a LADYbug.

Wearing beanies with some of his best buds

I LOVE this photo of Eli. He is getting so old!!!

Matt and I FINALLY got to go on a date! (First time since before Ella was born--other than when we were in the hospital, but I don't consider them dates-- we went to one of our favorite restaurants for lunch and to the river. It was beautiful. Thank you to my mom and friend, Sheila, for watching the kids!

Happy girl with piggy tails

Love,
Jillian

Joy in Suffering

Man I feel like there is just so much to say today! I just don't even know where to begin. While writing this, I found myself going back and adding information about this in that spot and that in this spot, so I hope it isn't too lengthy 😊.

I'll start with how wonderful our Christmas was. Ever since Matt and I got married, our Christmases have been jam-packed and amazing. We love our families and our traditions and have wanted to continue doing them, so we pack a lot into a small amount of time! Matt's brother, Tim, and our sister-in-law, Julie, came up on Saturday and we went to Matt's family's house to decorate cookies. It's so funny to see Ella in an environment that she isn't used to. She is so observant and looks like she wants to just take everything in. It was so cute watching her eyes get big when we would take her into a different room and to see how happy she was to be somewhere other than our house or our car. We spent a lot of time with Matt's family that weekend and enjoyed every minute. Christmas Eve came and it was weird for us because we weren't able to go to church together. For Matt and I both, Christmas Eve service was something that we loved and would help us get our brains in the correct mindset of Christmas. But this year, because Ella can't be exposed to any possible illness, we all stayed home and enjoyed the Christmas tree and some good Chinese food. We talked about how weird it was to not go to a Christmas Eve service, but really, what isn't weird in our lives right now? So it seemed fitting 😀

Christmas morning was filled with Eli and Ella opening their gifts with both sets of grandparents, uncles and aunt. Eli would rip open his gifts and Ella would grab a bit of the wrapping paper and I would pull the gift away from it so that it opened. She did a great job! I kept thinking to myself, "Man, I never would've thought we would get to do this with Ella." So many of the days in the hospital made this seem like it would never happen, but here we are! I must admit though, I made sure to decorate our house and wrap the Christmas presents early this year, just in case we would have to go back to the hospital. But hey! We didn't! We then went to Matt's aunt's house and enjoyed one of our favorite meals of the year, Christmas brunch. After we exchanged gifts and enjoyed our time there, it was time to get back home where we would have both immediate families for dinner. My mom and brother set up our house so that we had a long table to fit us all and made dinner. We enjoyed a yummy dinner and dessert at home. Usually we have dinner with my extended family with 30+ people, but this year we stayed home to keep Ella safe. It was a nice change of pace, but definitely felt a little weird not seeing all of my extended family.

The last few weeks have been a little tough because we cannot figure out why Ella keeps throwing up. We have switched her formula three times and still nothing seems to help. She's even on a hypoallergenic one and that still doesn't stay down. It's sad because many of the times that we hold her or sit her up she ends up throwing up. Not sure if it's because of the movement or the trach moving to trigger a gag or what, but it's sad when you aren't able to snuggle and hold your baby like you'd want to. It's frustrating. I ended up crying today while trying to hold her because all I wanted to do was snuggle her so I could feel closer to her, but she ended up throwing up and acted really uncomfortable. Once I laid her back down in her "happy place", or on the boppy lounger pillow, she was all smiles and was as happy as could be.

The blood that we originally found in her stool has moved up higher in her digestive tract and when I pulled up on her g-tube to check for residual, blood came out mixed in with her formula. We haven't seen it in her stool for some time now. We went to the lab last Friday to get bloodwork done, but haven't heard back yet. I am hopeful that it is going to come back and show nothing is wrong, but then we still won't know what's going on. We have a GI doctor appointment on the 11th so I hope we can get some things sorted out. The doctor has been off for the holidays so I haven't been able to be in contact with him. We've been able to talk with his nurse practitioner, but she doesn't really know Ella so we wait for our appointment!

Ella has been a lot more smiley and interactive with us over the last few weeks. We have seen a lot of progress in her physical and social development. She is now putting her hands together, reaching for her toes (only with the left side though), playing with her ears, and seems to be growing longer!

...

God doesn't call us to a comfortable life. No where in His Word does He say our lives will be comfortable.

2018 was an extremely uncomfortable year for our family.

Today I was in this funk where I felt like there is no light at the end of the tunnel with everything that we have going on with Ella. I decided to take a shower and listen to a sermon by Francis Chan. I have found that he often puts me in my place and always directs me back to the Lord and what my calling is here on earth... to serve and worship Him. So I googled "Francis Chan sermon pain". I decided to click on video with the title, Joy in Suffering. As I began listening/watching I recognized something about the podium he was standing at. This was a sermon he did at BIOLA! My alma mater! After that, I knew God was having me listen to that sermon for a reason.

Francis talked about how sometimes after we have been through intense suffering, we almost want to go back and experience it again. That may sound really weird to some of you, but the reason that we want to go back is because during that pain and suffering we experienced God's presence and intimacy with Him like never before. I could totally relate to this. Sometimes I find myself wanting to go back to the days where Ella was so out of our control that we had no other option but to lean on and cling to God. I felt this incredible peace over me the whole time we were in the hospital because I was so close with God. Now I miss that intimacy and closeness that I felt in the midst of the intense suffering. Even though we are technically still in the trenches with our Ella girl, we are in the comfort of our own home. It's different. Francis Chan went on to say how it's amazing how we want Jesus so badly that we want to suffer to experience that intimacy again. Seems so odd to think of it that way, but it's true!

He ended the sermon saying that the Holy Spirit will lead us into a crazy life, but a good one. I pray that God will give my family a spirit of boldness, and power that doesn't fear where He may lead us if we give Him control. I pray that God doesn't have us be people that believe only if... but may we be people who follow Jesus even if. I pray that God will give us courage to do whatever He calls us to do. That's my prayer for 2019.

The link to that sermon is here: https://www.youtube.com/watch?v=BTWyT79MbbY

Thank you all for going through this journey with us. We wouldn't be able to do it without you. Here's to a better year!

Love,
Jillian