June 28th - yesterday 5 months

kylielehr
7 days ago
5 min read

It has been a few days since our last update, and what a whirlwind they’ve been.

First things first… our boys are officially five months old. 💙💙

Like most babies, they had their own opinions about milestone pictures. Colton cooperated long enough for us to get a few adorable photos, but Declan decided he wasn’t interested in opening his eyes for the camera.

Maybe next month.

Declan

This week has been a difficult one for our little fighter.

As I mentioned in our last post, Declan underwent a lumbar puncture (spinal tap). Because of the procedure, he needed to be sedated. Unfortunately, the medications used for sedation, especially opioids, can cause significant constipation.

Afterward, he simply wasn’t able to poop.

The team tried everything they could to help, including irrigations and other methods to get his bowels moving, but nothing seemed to work. During one attempt, he developed some blood in his stool. With how fragile and sensitive his intestines are, everyone immediately hit pause.

His feeds were stopped while the team made sure nothing more serious was happening.

Those few days felt incredibly long.

Today, we finally got some encouraging news.

Surgery evaluated him and gave the okay to cautiously restart feeds. They recommended beginning continuous feeds through his feeding tube while keeping his G-tube clamped, continuing his wound care, and staying on antibiotics as he continues treatment for meningitis.

So today… Declan officially started feeds again!!! It may sound like a small step, but for us, it’s a huge one.

We’re hopeful this is the beginning of getting his tummy working again so he can slowly work his way back toward full feeds. One tiny step at a time. Fingers crossed that his little body continues to tolerate everything well.

Colton

Meanwhile, Colton continues to keep everyone on their toes.

He is learning something new every day. He loves to play, is becoming more interactive, enjoys eating, and laughing. He absolutely loves attention and isn’t shy about making sure everyone knows it.

He has also earned the title of our pooping and gas machine, which seems especially unfair considering what his brother has been going through.

Dad got to spend all day Saturday with him, giving him a bath, playing, and soaking up all the smiles. Those moments are so special after everything we’ve been through.

One of Colton’s favorite nurses was also back this week, and you could tell he was happy to see her.

While I was home on Friday, he was spoiled with attention from not one… not two… but three nurses. They danced around his room to Justin Bieber, laughed with him, and loved on him all day.

As hard as it is being away from them, knowing that our boys are surrounded by people who genuinely love and care for them makes it just a little bit easier.

On Saturday, Uncle Brian and Nancy also came to visit. They got to spend time playing with the boys, and it was so nice to have more family there making memories with them.

Looking Ahead

The next couple of weeks should be full of smiles. We have lots of family and friends planning visits to spend time with the boys, and we’re really looking forward to making more memories together. It should be a fun holiday week with so many people coming to love on them.

Five Months

Five months of fighting.

Five months of learning.

Five months of celebrating victories that most people never have to think about.

Five months of setbacks, tears, prayers, hope, and miracles.

Our journey looks very different than we ever imagined, but these boys continue to amaze us every single day. The love we have for them is beyond words. My heart hurts when I’m away and heals when I’m with them.

Thank you to everyone who continues to pray for Colton and Declan, celebrate every milestone with us, and carry us through the hard days.

Here’s to more full bellies, more smiles, more laughs, and more milestones in the days ahead.

Tonight’s prayer

Heavenly Father,

Tonight I come to You with a heart that is tired, hopeful, and full of gratitude.

You have carried our family through days I never thought we could survive. You have been faithful in every setback, every surgery, every sleepless night, every answered prayer, and every miracle. When I couldn’t see the next step, You already had it planned.

Lord, I pray that this season has been our hardest of hards. I pray that we have climbed the steepest part of this mountain and that, from here forward, we begin to see more victories than setbacks. Not because the journey will be perfect, but because You are leading us through it.

Thank You for every bit of growth we’ve already seen in Colton. Continue to strengthen his little body. Help him keep learning, laughing, playing, eating, and growing. Protect his lungs, his heart, and every part of him as he continues to surprise us each day.

And Lord… my sweet Declan. Oh Declan, my angel on earth baby.

Thank You for getting him through another hurdle. Thank You that today he is eating again. Thank You that You created every part of his tiny body, including his precious little gut. I pray that You continue the work You’ve begun. Let his intestines heal completely. Let them digest, absorb, and do exactly what You designed them to do. Let him tolerate every feed, gain strength, gain weight, and grow beyond what anyone expects.

I pray for steady progress. Fewer complications. More good days than hard ones. More milestones than setbacks.

Father, my heart keeps whispering that Declan will be the first one to come home. I don’t know if that’s Your plan, but I place that hope in Your hands. If it is Your will, let that day come. If Your plans are different, help me trust them just as deeply, knowing they are always better than my own.

Give Ryan and me peace while we wait. Help us celebrate every ounce gained, every feed tolerated, every diaper changed, every smile, every tiny victory that brings us closer to home.

Lord, we boldly ask that the hardest part of our story is behind us. We know there may still be difficult days, but we ask that this next chapter be one of healing, growth, strength, and joy. Let us begin to watch these boys flourish. Let the days ahead be filled with progress that only You can receive the glory for.

Thank You for never leaving us. Thank You for carrying our boys when we couldn’t. Thank You for reminding us that You are still writing their story.

We trust You with Colton.

We trust You with Declan.

We trust You with our family.

And we can’t wait for the day we walk out of these hospital doors together.

In Jesus’ name,

Amen.