Home Sweet Home

 9/9/22

The Iowa Wave

Last weekend was full of lots of practice for preparing to take Macklin home. Courtney stayed with Macklin 24/7 in the hospital and learned the ropes of how to administer all his meds and monitor him throughout the day. She was a trooper as she met with all the teams of doctors alone and helped finalize all the plans for Mack in his continued care once he came home. Keira had come down with a daycare virus, so in order to protect Mack and Courtney, Cory and Keira stayed home for Labor Day weekend. It was hard to be apart for that much longer, but we also knew it was worth it as the end of our time in Iowa City was near.

The long weekend gave Courtney and Mack the chance to experience the Iowa Wave from the windows of Stead Family Children's Hospital. We have always loved the Iowa Wave, but it certainly hit differently for our family as Courtney and Mack looked over Kinnick while the fans waved. Cory and Keira waved from home and we know many of you joined the wave in-person or at home while you watched the game. It's an amazing tradition that we can't wait to tell Macklin more about someday!

The Discharge

Cory and Keira drove up Monday night and our family was reunited after spending eight days apart. Tuesday brought on all the feelings as we went into the hospital knowing we would be leaving that day. The last thing we needed to wrap up for Macklin before discharge was a new blood pressure medication. This was a minor lingering issue that kept Mack from coming home earlier last week, but with a little medication, we were able to get it under control quickly.

Our last day at UIHC was full of visits from Mack's favorite nurses and doctors. After spending around 75 days in NICU Bay 1, it was amazing to see their continued love for Macklin and watch their faces as they got to experience just how much of a miracle Macklin is and how far he'd come since day one. We can never thank our nurses and doctors enough for the amazing care they gave Macklin during our 90 total days in the NICU -- they were such a pivotal part in saving his life.

After getting all our stuff packed from three months in the hospital, we finally were able to take the last wires off of Macklin and have a completely tube and wire-free baby in our hands. It was a feeling we can't put into words, a time we didn't know would ever come, and a moment we will cherish forever.

So we loaded Mack up in his car seat, headed to our car, and drove straight to the Ronald McDonald House for Macklin to meet his big sister. Keira meeting Mack was the moment we've been dreaming of since June 8. It was perfect in every way.

Home Sweet Home

We arrived home late on Tuesday afternoon to a driveway chalked full of welcome home messages from our neighbors and a house we had never had the chance to be a full family in yet.

Being home has been everything we dreamed it to be. Keira is making up for all her lost big sister time and we are so thankful for finally all being under the same roof. Mack is such a wonderful baby. It feels like a paradox that Macklin is an easy baby. He eats great, sleeps amazingly, and is so chill about his big sister messing with him and taking multiple meds a day. After 90 days of life and death situations, we can't help but be reminded that we have received multiple miracles to be where we are now.

To be home with no tubes, no wires, no oxygen tank, only five meds and a blood pressure machine is a miracle. Macklin alive today is a miracle. The right doctors with the right experience in the right place at UIHC is a miracle. 

We can't help but sit in solemn silence in our home and be thankful for the miracles that God has provided us. We met so many other NICU parents and children along the way that have now made it home or are still inside the walls of the hospital fighting for their child's life. We know God is always working everything, even the hard stuff, for his good. 

This applies to our journey and all those we met along the way. God has answered some prayers and left others lingering in the air with a different plan than what was asked for. It has been a hard and beauitful season in our own faith walk, but since June 8 we've known God would make his will for Macklin's life abundantley clear. We are humbled to be chosen by God to be Macklin's parents and go on this journey with him.

And the journey doesn't end here. We have multiple days of follow-up testing, check-ins, and rehab in front of us to prepare for the next day that Macklin will need another surgery to continue reducing the threat of the Vein of Galen Malformation.

Into the Future

For now, we are cherising the sweetness of being home together under one roof. We have a lot of work to do as a family to put ourselves back together after a hell of a 90 day run in Iowa City. We look forward to that hard work and will forever lean on Jesus to do His continual work through and in us, whatever it may be.

Our updates will most likely slow down at this point. As Mack hits milestones or gets healthier or gets sicker, we'll be sure to update this blog and call on our amazing prayer warriors for another miracle. We are so thankful for everyone who has supported us by prayer, monetarily, gift boxes, big hugs, little texts, or just showing up when we needed it the most. We honestly lost track of all the people and organizations that gave to us in this season. So please take this as our thankful. We are eternally grateful for how you loved us like Christ loves us. We couldn't done it without you.

Specific Prayer Requests:

  • For a miracle, that Macklin's next exams would show a compelte disappearing of the VOGM and he would be made whole.
  • For Mack's blood pressure, that it would stablize and he wouldn't need meds to keep him within a healthy threshold.
  • For Mack's development, that he would continue to thrive and rapidly make-up the developmental time he lost while in the hospital.
  • For our family, that we could bond together in love and unity and harmony once again, establishing new rhythms and seamlessly figure out how to be a family of four under one roof.
  • For our friends and children we met along the way in the NICU or PICU -- it's a tough journey, and they need all the prayer in the world too. September is NICU awareness month, and this little post sums up a lot of what it feels like to spend your days in the NICU. Prayer can ease and overcome it!
  • For the NICU nurses, doctors, and staff -- to be sustained and have endurance in a hard job that involves immeasurably amounts of moving information and data. We are so thankful for them.
New Way to Support

A friend setup a Meal Train for us over the next few months to ease us back into our transition at home. If you'd like to sign-up and provide us a meal, we'd be so grateful. As you'll see, the meals need to be dairy free for Courtney and Mack. Thank you!







Comments

  1. Ruth's girlSeptember 10, 2022 at 5:30 PM

    This comment has been removed by the author.

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  2. Ruth's girlSeptember 10, 2022 at 5:31 PM

    We are praising God with you! What a privilege it has been and will continue to be to pray for you and your beautiful Macklin.

    ReplyDelete

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