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!

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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