The In-Between

 6/20/22

The Last 48 Hours

The last two days have been full of watching and waiting for Macklin as he responds to his second surgery. At first, everyone was confused why the blood flow numbers didn't plunge in Mack's heart like they anticipated after embolizing five arteries in his brain.

One barrier they believed was the fluid build-up in Macklin. He had increased to 11 lbs from a birth weight of 7 lbs 11 oz. So they wanted to drain him of that as quick as possible. Macklin was up for the task and over 48 hours went from 11 lbs down to 9 lbs 4.5 oz. He was a peeing machine, and as the doctors noted, one of the only times they want babies to lose weight in the NICU.

Macklin has had two ECHOs since the last surgery. The first didn't show much change, but the second did. He had some good changes in the pressures of his heart, but there is still a reversal blood flow. Small steps in the right direction though!

The next big move we began to make was to close his PDA. If you remember, this is the newborn artery that they have been keeping open to allow blood flow to get to his organs and lower extremities that the Vein of Galen was taking away into his brain. Closing his PDA is a big step that Mack needs to conquer for everyone to see what the next intervention will be.

Option 1: If the PDA closes and Mack's heart and blood flow can't take it, we'll go right back to surgery tomorrow.

Option 2: If the PDA closes and Mack's body can still efficiently function, we then can progress into steps like taking out his intubation tubes, starting to feed him breast milk, and seeing what his baselines are without as much support and help.

We're Not Out of the Woods

Even if things go well, Mack will most likely be here in Iowa City for the next month or two and still need another surgery. Allowing him to grow and develop and get off supports is important to figure out what he needs in order to function alone and go home. Most likely, there will be at least one more surgery before we can ever go home.

Then, we'll need to get into all the insurance riff-raff to see if there is a possibility of going out to Boston for Dr. Orbach to perform future surgeries on him or if we keep coming back to UIHC. Overall, Macklin will continue to need surgeries and interventions for the first two years of his life most likely unless the miracle we have been praying for comes his way.

Behind the Scenes

Slower days with no surgeries or threats allow us to spend more quality time with Macklin. We are reading him lots of books, helping with his cares (temperature, changing diapers, oral care, etc), and praying over him constantly.

Macklin really started waking up yesterday and it was the most precious thing ever. He opened his eyes for the first time since June 9, grabbed our fingers and gripped hard, kicked his feet, stretched out, and was more active than he's ever been!

We've also been isolated from Keira the past few days as she was exposed to Covid. It has been so hard on our hearts to not be with her in the mornings and afternoons, but we can't risk getting Covid because then we couldn't come into the NICU and seek Macklin for 7-10 days. Hopefully, everything is ok with her and we can get back to our former routine with her.

Our families have continued to be amazing with their support and flexibility. We are amazed at how they have cared for us, for Keira and Loki, and covered us in prayer and presence. 

Our friends and communities have also blown us away. You all continue to blow us away with prayers, love, and support. We are speechless. Mack is on prayer chains all over Iowa, and in Texas, Peru, Tanzania, Jamaica, and probably other places we don't even know about. God has shown up time and time again through you all. We couldn't make it through this without family and friends -- thank you.

Prayer Requests:

  • For a miracle, that on the next ECHO, X-ray, MRI, blood draws, or whatever -- the doctors would be irrationally amazed at Macklin's healing.
  • For Macklin's body to efficiently take on the closing of the PDA and allow us to journey into the next step of what a true baseline looks like for him with fewer supports.
  • For Macklin's heart to recover from the stress of the VOGM, and start to go back to it's intended size and function
  • For Keira to be Covid-free and able to join us again full-time.
1 Chronicles 16:11, "Seek the Lord and his strength; seek his presence continually!"

Ways to Support
1) Prayers as noted above!
3) Venmo (@corynikkel)








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