A String of Firsts

 7/9/22

A First for Everything

Macklin has had a great few days. His pressures continue to look good in his heart and his body has responded to the current pulmonary hypertension (PH) drugs he is on. They took him off nitric oxide, and took two other wires off of him, so his room has more space and he's looking more like a normal baby.

Mack's been given more of a "green light" to try some normal baby things as he was a full-term baby, is now a month old and is ready for it. He is such a strong little guy too, so they want to be sure to do anything "normal" that we can. Below is a list of firsts we got to enjoy with him over the past few days!

  • First nursing session (woohoo!)
  • First skin to skin
  • First bath (Mack was not a fan)
  • First tummy time (loved it!)
  • First crib (no more special NICU bed)
  • First time mom and dad got to take him out of the crib by ourselves without help 
  • First time he got his nails cut
  • First (very hoarse) cries and coo's - YAY no more intubation!
  • And he turned one month old a couple days ago!
It's felt really good to be able to take these steps forward with him. He's done pretty great with all of them!

Some Fun Facts

Throughout our time here in Iowa City at UIHC, we have learned many interesting facts (not all are fun) about Macklin and his journey. There are a few worth sharing as it gives you a little insight into our world.

  1. Macklin was "the baby" when he came to the NICU here at UIHC. By "the baby" we were told that he was "the most critical case" in the NICU. He was priority number one and everyone was all hands on deck for him. He has since been demoted and is no longer "the baby" :) It's crazy to think that we are parents to "the baby".
  2. The chances of being born with Vein of Galen Malformation (VOGM) are about 1 in 3 million (.000033% chance). The chances of being born with PH is about 1 in 1,250 (.08% chance). 
  3. Thirty years ago, there was no procedure to fix VOGM. Infants born with it usually passed away due to heart failure within a week. There still isn't enough data out there today to even know what a 30-year-old with VOGM looks like and what their life is like. We are venturing into a lifetime of unknown.
  4. Macklin's ECHOs are reviewed by Dr. McNamara, Division Director of the NICU,  before any results can be released or new plans of action can be formulated. He is "the baby" to Dr. McNamara and is a very unique case and study for the hemodynamic division. 
  5. Macklin just started a new drug for his PH called Sildenafil which was invented to help adults with PH. The drug has come a long way since then and is ok for infants to have, but it also has another indication. Sildenafil is also known as Viagra. That's right, Macklin is on Viagra (haha!).
Next Steps

The next steps for Macklin are full of trial and error for what helps him best with his PH and what we can go home on. This is going to take a while -- most likely a month plus. It will be hard to navigate another period of waiting and to be nerve-racking to see what works and what doesn't. Some drugs can be oral doses and easy to go home on (praying for this!) and some need to be subcutaneous injections and/or given by vapor through the nose (no thank you).

We continue to be thankful for all your prayers and support. The prayer game is just getting started! God has answered so many, and we have so many more prayers to go as Macklin navigates this unique journey that God has given him.

Specific Prayer Requests
  • For a miracle, that Macklin's next tests and scans would reveal that everything complicated has gotten easy -- it's solved -- it's supernatural and an act of God.
  • For his PH drugs to work, that the new drug would be just what he needed, that the other drugs could be weaned off, and we could go home with simple solutions to help his PH and provide him the best "normal" life possible.
  • For his VOGM, to remain steady and not create any unforeseen issues that mess with his heart.
  • For mom, dad, and Keira, that we continue to gracefully navigate all the ups, downs, and in-betweens that it takes to love on Mack here in Iowa City.

Proverbs 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding;
6 in all your ways submit to him, and he will make your paths straight."


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





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