Steady

 7/16/22

No News Is Good News

We're sorry for the long time in-between posts, but not much has been happening with Mack when it comes to intervention and care. This is a good place to be in compared to the action-packed weeks of surgery and life-saving moves, and it's a hard place to be in because our time with our son is spent waiting in the NICU instead of at home.

We've been blessed that many prayers have been answered, that his interventions have worked, and we continue to pray that this course of action continues as we move forward and try to find a way home.

Steady

The best word to describe our current status is steady. Mack is making steady progress forward, the drugs are working steadily, and we both feel steady right now as parents. This journey feels like we're riding blind in a kayak. When we first started, it felt like we were thrown into rapids with no training. We were thrashed back and forth, flipped upside down, and somehow came through the rapids ride-side up breathing. Now, we are steadily paddling forward. There are some threats on the left and right but we've stayed balanced in the middle. There are also multiple streams we could go down, but we're not quite sure yet where God is leading us. So, we steadily paddle on not fully knowing what is in front of us.

The Last Week

Macklin continues to grow steadily. He's almost made it to 10 lbs and has gotten a bit longer too. He's nursing really well, pooping and peeing really well, starting to coo more, and even flashing glimpses of a smile.

Medically, not much has changed for him. He made it up to the full dose of sildenafil, they took off his oxygen support so he is breathing room oxygen, they upped his feedings when we're not here because he was crabby he wasn't getting enough food, and soon they will begin some therapy sessions with him to help him develop at a normal pace.

Our next checkpoint will be on Wednesday when he receives another ECHO to show us how his pulmonary hypertension is doing and if sildenafil is making any difference. At that point, they'll begin talking about what other drugs they can ween. If he's gotten worse, then they will drop sildenafil and try a different drug that has only been used on 12 babies here at UIHC but has gone over with great success.

Transitions

One of the views on the horizon of this journey is Cory's transition back to work. With the school year approaching, there are lots of items to be completed and more time he will begin spending in Des Moines. We know this will be new for us to be more apart than together, so we're already ramping up our prayer for this transition. We know God will comfort us and hold us during this time.

We have no timeline for Macklin to make it home yet. Our hope is that it could be before school begins, but we really don't know. They keep telling us that Mack is the first baby on the list to move out of Bay 1 into Bay 2 or 3, but it hasn't quite happened yet and day after day we watch other babies move but Macklin stays. We hope that transition is coming soon and more "new" things will come with it, as well as the hope that Macklin can keep progressing himself out of all care, meet all goals, and head on home.

Thank you for the continued prayers, support, love, and encouragement. We are ceaselessly amazed every day by the love we feel from you all. Thank you. We continue to wait upon the Lord and ask you to intercede with us in this time of steadiness. Although it is calm, there is much work to be done, and the Lord is on the move. 

Lamentations 3: 19-26, "Remember my affliction and my wanderings, the wormwood and the gall! My soul continually remembers it and is bowed down within me. But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness. 'The Lord is my portion' says my soul, 'therefore I will hope in him.' The Lord is good to those who wait for him, to the soul who seeks him. It is good that one should wait quietly for the salvation of the Lord."

Specific Prayer Requests

  • For a miracle when the next test results come back, they would stare wide-eyed at how everything in Macklin's body is healed by the grace of the Lord Jesus Christ.
  • For Mack to be able to transition smoothly off of some of his current drugs and only need one drug that he can take orally to be able to go home on.
  • For Mack to continue doing well with nursing and other feeds.
  • For Mack's timeline to be swift so that he can be home before school starts.
  • For continued wisdom for all involved in the love and care of Macklin.
Ways to Support
1) Prayers as noted above!
3) Venmo (@corynikkel)




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