Moving On Up!

 7/30/22

See You Later Bay 1

Macklin officially graduated out of the Bay 1 area of the NICU! Bay 1 is for the most critical babies who need the most care, intervention, and one on one nursing. We have now moved to Bay 2 where Macklin shares a nurse and the rooms are half the size, but it also means we are one step closer to going home.

It was bittersweet leaving Bay 1. Macklin spent the first 50 days of his life there, and we got to know all the nurses and doctors so well. It became a new family and support system for us as we navigated through many unknowns. We will never be able to thank our Bay 1 family for all they did to save and support Macklin's life.

Goodbye Medicine

Over the last week, Mack has been on the journey to drop two of the medications he was on to help with his pulmonary hypertension (PH). Both of these were drugs we could not go home on. First he weaned of the Epo, and we could tell he noticed this coming off as his blood-oxygen level dipped a little bit. Quickly though, Mack rebounded and was able to fully come off Epo with success.

He had another ECHO to follow up how his heart and pressures were doing after the Epo was off, and his pressures had dropped back down in to the 50s which was a huge praise! With his pressures going back down, the hemodynamics (blood flow) team felt that it was time to also wean Mack off his milrinone. Over the next 72 hours they were able to wean him off of this medicine, which was being used to relax his heart and make it easier for his lungs and body to circulate blood flow.

So far, Mack has done really well with this step as far as we can see on the outside. Mack has always "looked good" on the outside though, so we will have another ECHO on Monday to confirm that he can stay off the milrinone.

What's Next?

With these two medicines dropped, hopefully we can start having the conversation of what it would take to get home. We know Mack has to get way better at feeding. He is still on his RAM to help reduce the energy/work it takes to feed. Right now he is taking about 60% of his daily feeds by mouth, but the other 40% need to be fed to him by his NG tube. His next goal will be to take all feeds by mouth and to wake up/stay awake for them instead of getting them through his NG tube.

Still behind the scenes of all this PH stuff is his Vein of Galen Malformation (VOGM). We have sent all Mack's records out to Boston Children's Hospital so that Dr. Orbach and his team can review them and consult with us about when the right time is to have another VOGM intervention. We don't have answers on that yet, but we do know that the surgery team here at UIHC did a great job at signficantly reducing the flow of the VOGM in Mack's brain and gave us the breathing room to not need any more emergency surgeries. Hopefully, from here on out, we can schedule these with Dr. Orbach and do them as safe as possible.

August 1 marks the next transition for our family as Cory returns to Des Moines for work and Courtney and Keira stay in Iowa City. Our miles apart and miles traveled will be greatly increased from where they have been, but we are praising the Lord that Mack is in a stable spot so that we feel at ease with taking these next steps. Even so, we know it will put pressures on us that we haven't ecountered yet, and we are praying that the Lord fills us up with peace, patience, and joy during the next leg of this journey.

Specific Prayer Requests

  • For a miracle, that Mack's next ECHO would reveal normal pressures and a robust blood flow that circulates through a perfectly formed cardiovascular system 
  • For Mack to remain stable and healthy without the support of Epo and Milrinone 
  • For Mack's energy levels and feedings, that he can feed well, gain stamina, take in 100% of his feedings by mouth, and continue to get stronger and grow bigger and develop as an almost two month old should. 
  • For our family, that the Lord would fill us with peace, patience, and joy as we navigate being apart for the first time in this journey. 



 

Comments

Post a Comment

Popular posts from this blog

Welcome to the Mack Attack

Image
 Dear Family and Friends, Over the past few days, we have been on the ride of a lifetime. We hope it's a once-in-a-lifetime ride, but even so, the love and support our family has received from you all is incomprehensible. Thank you. Two days into this journey, by way of a friend of a friend of a friend connection, we were introduced to a family in Des Moines who has had a son born with a Vein of Galen Malformation (VOGM). We have since learned that the chances of being born with VOGM is 1 in 3 million. To find someone else in Des Moines, IA was jaw-dropping, and also gave us some hope to understand more of what Macklin is up against. Through conversations with them, their son who is now a healthy and astute Kindergarten graduate, quickly named Macklin "Mack Attack" because he believes Macklin is going to attack this thing with everything he has in him just like he did. So here we are, Day 4 of Macklin attacking a serious, rare malformation in his brain. Below is the first...
Read more

Roller Coaster Ride

Image
 8/7/22 New Findings Friday felt like a roller coaster ride. We were mentally and emotionally being pulled along as we ramped up for another surgery for Mack. We prayed over him, said see you in a bit, and watched him be wheeled out to the cath lab. Within two hours we got a call that the procedure was over. This was unexpected as we were told it would take 4-5 hours that day. We rushed back to his room from our waiting spot and were able to talk with the pediatric cardiologist who did the procedure. The first goal of the procedure was to do a diagnostic test that is the most accurate way to get all the pressures of Macklin's pulmonary system. Our prayer in that test was that they would not find any need to put a stint in Mack. That prayer was answered. The surgeon told us his pulmonary veins looked great and there was no need for a stint at all. Secondly, he said something that caught both of us by surprise, so much so that Cory asked the surgeon to repeat it two more times. Dr. A...
Read more

Shipping Off to Boston

Image
 3/9/23 Join the Journey on Instagram Courtney has started a profile to more intimately and actively follow Mack's journey, even in the day-to-day. If you want to follow along, you can do so on Instagram  @VOGMomma . It's Been A While Hey everyone! We looked back at the last blog and saw that it was on November 17 -- wow! It truly has been a while since we've updated everyone on Mack Attack, but as we said in the last post, no news is good news. For the past four months Macklin has been working on growing and developing. A majority of his checkups have been with physical therapy, tracking his skills to ensure he is on pace. We're humbled to report that so far, Macklin is on pace like any "normal" child (with a few things to keep working on). This is a huge answer to prayer. At birth we were given a spectrum from "he may not walk or talk" to "he could be a normal guy". It's hard to live in a large spectrum like that, waiting every day to...
Read more