Mack Attack

 6/28/22 Long-Awaited Test Results Since our last update, we've been awaiting Macklin to undergo a couple more tests to show how he's doing in the current care pattern he is in. He had a long, relaxed weekend where mom and dad got to hold him and the teams of doctors stayed away. It was nice to get some extra time with Mack, to hold and read to him, but it also felt weird that nothing was happening. After such a rush of information and action the first two weeks, it was really our first slow period of time. Test 1 - MRI: Mack hasn't had an MRI since the first few days he got here. After undergoing two major brain artery surgeries to reduce the Vein of Galen Malformation (VOGM) and being at risk for a stroke from those surgeries, we haven't seen any updates on his brain. Yesterday, the Neurology team (brain team) came in to review Mack's MRI. A total of five people came into the room, which normally is concerning because you think oh it's bad news,  but with Mac...

 6/25/22 The Past Few Days Sorry for the delay on this blog. We try to update it every two days now that we're in more of a steady-state with Macklin, but the past few days got filled up quickly with new doctor meetings, time with Keira, and exhaustion that led us to falling asleep way earlier than normal. Three days ago, it felt like we were taking some steps forward and lots of hope started to fill our hearts. The blood pressures and fast flow were down after his two surgeries, his umbilical lines were going to be removed with no impending surgeries in the future, and they were going to start feeding him mom's milk. A couple of those things did happen -- his UVC and UAC umbilical lines were removed (which means we get to hold him again!), and he started receiving mom's milk via his feeding tube. The pressures of his heart though, not so good. 3 Steps Back All the ground we thought we were gaining was quickly taken away with the official diagnosis of what we didn't wan...

6/22/22 Two Weeks Today marks two weeks since Macklin was born. It's hard to believe that we've been away from home and inside hospital walls for that long. We know too that it isn't ending soon. More than likely, Macklin will be here for around two months. Even so, Mack attacked all of this with courage and strength. He has defied odds, kept his baseline stats, gone through two surgeries, been constantly picked and prodded, did everything the doctors asked him to do, and I have no doubt, will continue to do so as we start to navigate new territory. The New Territory At this point in time, all our teams agree that Macklin doesn't need a surgery in the near future (and we hope not again during his time here in the NICU). This is a huge answer to prayer. It means the two surgeries worked well and we can buy some time for him to grow and develop before we have to enter into the risks of another surgery. Over the next couple years they estimate he'll need another 4-6 (o...

 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 rem...

 6/18/22 Surgery Round 2 An empty room speaks your thoughts the loudest. Sitting in this room was really hard for us yesterday as Macklin entered into another day of surgery. We were full of less emotion and more numbness this round. When your conversations are full of statistics of survival, complications that occur, and that there is no real progress that has been made, you just start to feel numb to it all. We were able to go out to lunch for some different scenery as they prepped Mack for surgery. He went down to the surgery room around 1:00 pm yesterday, surgery began at 2:00 pm, and he finally made it out and back up to his room around 6:00 pm. The surgery team was really excited about the results of the day. They told us they were extra aggressive this round because they had missed one chance the day before and really wanted to see a difference for Macklin. They were able to do five successful embolizations! This put the total up to seven over the course of two days. They no...

 6/16/22 The Morning Of We rose early this morning to get to the hospital and see Macklin before they sent him off to surgery. We were able to pray over him, speak words of encouragement into his ears, and talk with the doctors before they sent him off. He left the room at about 7:45 am to go down to the surgery center. This was the most difficult moment that we have ever faced in our lives -- to send our child away into a risky surgery in order to save his life. Our hearts were shredded. The team took the next two hours to get him set up and prepped for surgery. While they were doing this, we grabbed some breakfast and went to the rooftop cafe here at UIHC and sat in the morning sun and cool breeze, flipped on worship songs, and lifted up prayers. Surgery Results Macklin was in surgery from about 11:00 am - 2:00 pm. This was relatively short for what we have read about for length of surgeries with VOGM. Throughout the surgery, we really only got basic updates that things were "go...

 6/15/22 Surgery Rescheduled At 9:00 am today we received a call that surgery wasn't going to happen at the original time of 10:30 am due to not having the right pieces of the team assembled. Although frustrating, we know we want the best for Macklin. We waited around for a good part of the day thinking surgery may still happen but eventually got our answer that surgery was moved to 7:30 am on Thursday, June 16. The Hard Stuff Some of the hard stuff about this process is starting to hit us. Today, Mack turned a week old. He should be in our arms at home, he should be crying bloody murder for more food, he should be doing tummy time on the ground while Keira tries to move him around, we should be at our home, we should... we should... we should. It's hard to stare that stuff in the face when you instead stare at cords and listen to beeps for a majority of your day. We also have started wishing other things on Macklin... we wish he had ____ instead of Vein of Galon Malformation (...

6/14/22 Surgery Day Well, Mack decided he wanted to attack the surgery a little faster than everyone else, so he’s going in for surgery to take a first go at solving the Vein of Galen Malformation (VOGM) tomorrow at 10:30 am (June 15th). This surgery will take all day, so there will be lots of opportunities for prayers and thoughts for him and his surgery team the whole day!  Mom and dad both got to hold Macklin tonight before surgery comes tomorrow. This filled our hearts so deeply. New Stuff In other news, we moved into the Ronald McDonald House here in Iowa City yesterday and Keira is loving it. So many fun things for her to do and some easy amenities for us to use while we try to create a home away from home. You also might have seen that our family started a  GoFundMe   for us to help with future and unpredictable  expenses. If you would like to give there or through Venmo (@corynikkel), you can. So many people have already been such a blessing to us, from gift ...

  6/13/22 Let's start with the good stuff today.  *Courtney got to hold Macklin yesterday! Our nurse snuck in and said children are never allowed to be held in a situation like Mack's, but they pulled some strings and made it happen for us. We were so surprised and the hour and a half Courtney got to hold him was so refreshing. AND his vitals were actually better than they have ever been as he relaxed within mama's embrace. We are grateful. **It's Keira's birthday! She turns two today, and we were able to celebrate her birthday last night with our immediate family. Our empty tanks were refilled with joy and hope again as Keira played with her cousins, danced the night away to "Wheels on the Bus", and dug into her cake and ice cream. We are so thankful for Cory's brother and his family who drove from Sioux City to be there, Courtney's brother and sister-in-law who graciously hosted tons of people, Courtney's sister and brother-in-law who rushed ...

 6/12/2022 The past four days have been overwhelming. Overwhelming with information, questions, meetings, discussions, connections, research, updates, changes, lack of sleep, pivots, and starting to think about what could be the new normal. Firstly, the pouring out of prayer and support has blown us away. We are speechless at the love we have received and the helpfulness that has poured in. It's been really hard to know what we need these past four days. As we've been told and now see, this is going to be a marathon, not a sprint, so I'm sure needs will arise in the future that we can better name and ask for. Thank you, to all the prayers and love -- we can tangibly feel it. Macklin's Condition: There are some important facts to know about Vein of Galen Malformation (VOGM), and they aren't full of everything a parent wants to hear with a child stuffed full of wires in the NICU. We have asked all our doctors and specialty teams to be real with us through this all. We...

 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...