The Detour

Hi everyone,

I had a little bit of time, so I figured I'd write to let you all know how Ella is doing. They haven't been the best few days, but they definitely haven't been the worst. 

Since Monday, Ella has been pretty stable. And by stable, I mean "Ella stable" HAHA! Her oxygen saturations have been ALL. OVER. THE. PLACE. She has been anywhere from 50-98. She's stumping the doctors and respiratory therapists. She has needed anywhere from 40%-100% oxygen support (remember normal air is 21%). And the ventilator settings have changed every day. Sometimes she needs more support in one area, sometimes less. It's all very confusing, but I am thankful to have such brilliant doctors, nurses, and respiratory therapists that try so hard to figure her out. The docs have told us that it seems like we will most likely go home with a ventilator. This complicates things a lot... It makes our home lives a lot more difficult. We will be able to leave the house, but instead of carrying 6 bags it'll be closer to 8. I don't think I totally grasp what it's like to have a trached kid on a ventilator at home, but all I know is that it scares me. 😁 I know the first time that we were discharged from the hospital we were told that we would most likely need the ventilator, but all of a sudden Ella's breathing got better and she proved not to need it. I keep asking God to perform the same miracle that He did then, now. Ella does seem to pull through when we really need her to 😊. She's good at that. And no, we still have not mentioned the d-word (discharge date).

We were able to remove an IV from her head which took a while because the tape was so stuck to her hair. I used an adhesive remover pad with orange oil that worked really well and Ella didn't seem to mind it. Poor thing, we are always doing something to her! No wonder she wants to sleep a lot, we always wake her up! 😊 It's always said not to wake a sleeping baby, but that rule doesn't really apply in the hospital. I am glad the IV is gone though because now I get to rub her fuzzy head more.

She is starting to get bolus feedings. This means that they compress the amount of milk that she was given into a specific amount of time. For instance, Ella is getting 76mL of fortified breast milk over 2 hours every 3 hours. It may not seem like a big deal, but it is! She was on continuous feedings before, so her tummy is starting to get to work like a normal person's. We will slowly work our way down to 76mL over 30 minutes.

God has been teaching me so much through all of the ups and downs we've gone through with Ella. I wanted to share with you a bit of a devotion that my mother-in-law sent to me recently. It explains exactly how I feel...

The detour you are on is actually the road.

What a horrifying thought.

When my plans go awry, I always want to believe that I have taken a temporary detour. Maybe it’s a long one, but I hope that the real road, the road where I can return to being happy and fulfilled, is up ahead. Maybe it’s just around the corner if I can simply hang on.

Trusting that something better lies ahead is important. It helps me persevere in the midst of suffering. It gives me hope.

Yet at the same time, my hope cannot be in changed circumstances. I have no guarantee that my situation will improve. The hope that will never disappoint me is rooted in the person of Jesus.

...

Should I earnestly ask God to change my circumstances? Should I draw near to Him in prayer, write down my requests, and regularly seek Him for the things in my life that I want to see changed? Godly things. Restoration. Healing. Return to active ministry.

Or do I recognize that I am on a different road? One that may not bring the healing and restoration that I would like, but rather a closeness to Jesus that I could not get any other way.

Yes. (I loved that part!)

God invites me to ask Him to change the things that I long to be different. To persevere. To trust that my prayers make a difference.

But at the same time, God bids me to accept where I am. To let Him meet me in the darkness. To find comfort in His presence.  

God calls me to do both. Every day. On every road.

The old road often seems like it was more relaxing and easy to drive. The new road can be bumpy and twisty, narrow with sharp curves. And I find myself longing for the ease of what I used to have.

But the new road has benefits too, perhaps not in ease but in seeing life differently. More introspectively. Really noticing everything rather than rushing forward, oblivious to my surroundings.

But regardless of what I gain, it’s a challenge to accept that the detour is now the new road.

Isn't that so well written??? It's so spot on with how I have felt through the past five months. I love it. God has been teaching me so much. My mom asked me one day if I would change the situation, I told her that I would change Ella's suffering, but I wouldn't change the growth I've seen in myself and my family. Ella has brought me to the feet of God on my knees with tears streaming down my face  and He has been there to pick me up and wipe my tears away. I have seen such amazing things happening here in the PICU and I will never be the same person I was before Ella entered our lives. I am so thankful for her and am so blessed and honored to be her mom.

Eli was able to go to preschool on Tuesday!!! He loved it. I am so thankful that I was able to take him. I am sad that I don't get to take him every time he goes, but I am thankful I was there the first time. I hope to be able to go home late on Monday nights every week and take him on Tuesdays.

I wanted to mention here (so I don't forget some day) how amazing he was on the night that Ella coded. He looked at me as I got the call and noticed that I was crying. He said to me, "Mommy, what's wrong? Are you crying?" I responded saying, "Yah buddy, Sister is really sick and we have to go see her." He said in his sweet little voice, "Oh Mommy, what happened?" I said, "Her heart rate dropped really low and we don't want that to happen." He said, "It's ok Mommy, she will be ok," and he reached out to hug me. I am constantly in awe of his amazing understanding of what's going on. I can see how God designed him to be a great big brother to Ella. He has helped us get through these trying times. Matt and Eli are on their way to the Economy Pest Control staff camping trip. We didn't tell Eli ahead of time about this trip because we never know what is going to happen with Ella, so once he found out this afternoon that he was going to go camping he was SO excited!

We are seriously overwhelmed by the generosity of Economy Pest Control. They have been such a HUGE blessing to our family from day 1. I am so thankful that Matt works there. They are doing a car wash to raise funds for our family on Oct. 6th and started putting up big banners to promote it around town. I love the photo of Ella that they chose to put on the posters. She looks so sassy and cute. You can tell by that photo that she's a little fighter!!! They are also setting up two more fundraisers that will happen later in the year.

Aren't they amazing?? I am so humbled by everyone's generosity that they've shown us.

Here are some photos from recently...

Check out that hair!!!

Ashley (our surgeon's assistant) loving on Ella.

Ella hasn't done very well with the IPV breathing treatments so they tried something else. This vest giggles her to help loosen up the gunk in her lungs. It's so weird looking. She looks like she's about to take off into space!

Eli's first day of preschool on Tuesday!

Wonderful big brother sleeping with Ella's blankets on the bed in the hospital room after we rushed down her when she coded on Saturday night. 💜

Love,
Jillian