Milwaukee

I will never forget the drive down to Milwaukee from Minneapolis. A 5 hour drive that felt like 5 days. We were told by the life flight team caring for Henry in the air that they would do their best to update us, but the chances we hear from them in flight are low. We got initial word that they were loaded into the flight from the St Paul Private Airport, I remember my parents making the drive to see their only grandchild at that time fly out, they didn’t get to physically say goodbye to him but having to wave to him from afar as he took off in a life flight. Gut wrenching. 

My husband and I, I swear, drove so fast down highway 94, we told ourselves if we got pulled over we were going to ask for a police escort to Children's Wisconsin. Even if it was hour one of the drive. When we hit hour 2 of our drive we finally got an update from the flight team, landed in Waukesha Wisconsin. The tiny private airport just outside of Wauwatosa where the Children’s Hospital was. Henry made it, I could breathe. They safely loaded him into an ambulance, he was intubated, fully sedated, a 4 month old baby on his way to a children's hospital all alone with his parents hours behind him. 

Henry arrived at Children Wisconsin’s CVICU that evening with a team who swarmed him. So many new people had to get to know this tiny little baby from Minnesota with half a heart who was very sick. We received a phone call from the nurse that was admitting him asking all the initial questions and then how far out we were. Telling them we were only 2 hours away when we probably should have been further and his response being “he’s ok, we got him, slow down.” In that moment I knew John Paul would become such a pillar in Henry’s care in the months to come. 

My husband and I arrived hours later to a huge hospital, one so much larger than what we were used to. We were escorted from the lobby by security to the unit quickly and were brought to room W320, our new home. Standing there was Nurse John Paul, the man that told me over the phone that he had Henry and that he was ok. Even though Henry was not ok. The ongoing joke now that we have gotten past it is that Henry was the trojan horse. When he came to Children’s Wisconsin he looked like a perfectly sick HLHS baby in need of a heart transplant, straight forward case. What we didn’t know was what was below the surface. Henry was in septic shock, an infection that had spread so aggressively through his body that no one had noticed from the time we left Minnesota to Wisconsin. Years later our nurse in Minnesota says he took his temperature before he left and he noted it was high, and that cultures should have been drawn and figured out what was causing that fever when he was still in Minnesota. 

Regardless, Henry was now working against the clock with an infection that could very easily take his life. As if we hadn’t already been hit with enough blows. We just moved him to a new facility with hopes that this was going to save his life, not bring him here to die. The team let us know they had started him on a broad spectrum antibiotic until the test results came back for them to focus on what exact medication to use. They told us to go to our hotel to get settled, since we wouldn’t be getting into Ronald McDonald house for a few days until our referral went through.

The next day I vividly remember the vast difference in size of the hospital scared me, we got lost getting to the unit. After being at the U of M, it was a big hospital but the children's tower was small and there were only 12 beds on the CVICU, Milwaukee had 24 in theirs. The morning following our arrival was a lot, I remember the amount of people, specialists and counselors we met. In the middle of this, it was time for our first rounds with this team. In walked the Transplant team, 3 people that consisted of a doctor and two nurses. The doctor walked right up to my husband and I, shook our hand and even though we had been on the phone with him for many weeks, meeting him and his team for the first time actually made it real. Henry was in the process of being listed for transplant, this was the last shot we had. 

Listing for transplant is not a simple process, there are many rules, regulations, labs, scans and interviews and then a team that reviews all of this before a child is deemed to be listed. You heard that right, we were interviewed while Henry had to get his blood drawn, XRAY’s, a cath and more tests to ensure they had all the data they needed to input into UNOS for his future donor pool.

Part of the reason parents and families are interviewed is multi-layered. The team wants to make sure it is fully understood that the care a child has to receive after a transplant is many medications, appointments and follow up care for the rest of their life. There isn’t a time where they won’t need labs to check their medication level, or when they don’t have to be put under to check their donor heart for rejection and the health of it. On top of that, they want to understand what our support system looks like. This was to make sure that in hard times or when we need an extra hand are there people in our life that are going to step up and do that. Something about this really brought comfort to my husband and I, because knowing that they put this much care into the listing of a child has as much to do with the child and their heart and what they need, but also what their family support system is. A family that is capable of supporting each other and knows that this commitment to a transplant is one for life, is a family that is going to have a child thrive outside the hospital, and we as a family have always respected that mentality.

Henry was still very ill from a sepsis standpoint so on top of us trying to get him listed for transplant, this infection was holding us back. Until Henry was showing signs that he was recovering, he was going to be listed as status 7 on the transplant list; which means couldn’t receive a heart because he’s too sick but is accruing time. A dagger to us but we knew that once he was showing the correct signs that he would get bumped up to the highest status on the list. 

I remember his belly growing so big, he looked like he had eaten way too much. In reality this was not a good thing, his body was swelling and reacting to the infection. His belly wasn’t full of food, it was fluid. All signs are pointing towards not a good ending for us. The team was puzzled by this, how he had gotten this infection and what antibiotic was going to beat it.

By the time we had reached the week mark, they had found a concoction of antibiotics that were working. Not to mention all the other medication he was on for his failing heart. The towers in his room were everywhere, medication pump, one after another and then a ventilator on top of it. We had this recliner we could sit in and watch him, a small desk and a curtain that my husband used as his office. Those of you that worked with him during that time, probably remember those phone calls. Yellow walls with a small black TV in the background, that “office space” also doubled as a pullout couch that we could sleep on if we ever wanted a nap or stayed overnight.

My parents & my In laws who in the grand scheme of things hadn’t really spent that much time with Henry in his young life, due to COVID restrictions and how much he was in a hospital, had made the drive to be with us during the first few weeks of the Milwaukee transfer. They were actually allowed to be in his room and see him, holding his tiny little hand. Even though Henry was completely sedated and not engaged, having them there I still think to this day Henry knew that his family would always be by his side. 

Henry slowly started to make strides in the right direction, but not without many setbacks. There would be days that his infection numbers would be improving, and then he would spike a fever, restarting the clock on when he was considered “out of the woods.” As a heart parent, many of us can relate to this never ending cycle of highs and lows. 

One story that I have told recently is how we came about getting our ICU Attending Doctor. Every child had a doctor on the unit that was assigned to them as their doctor. Essentially giving consistency to the family and team, knowing that no matter who was on that week that his doctor was going to be included in every conversation and decision. Not to mention we were on the transplant team as well, so our oversight was a lot more than we were ever used to. Nonetheless, I remember the day Dr. George Hoffman came in, a quiet, smart, stoic anesthesiologist that was really hard to make laugh. His brain is one that I would love to live inside one day, just to see all the moving parts and how he can solve all these puzzles. We had just wrapped rounds and he had absolutely destroyed this resident doctor over them not knowing an answer to one of his questions about Henry and why he may be presenting the way he was. When Dr. Hoffman had turned to me when the resident couldn’t answer it and I could, he used it as a learning opportunity to show that “Parents of critically ill children are some of your best resources, they know their kids quirks and they know their kids illnesses, because it’s their life now, it's all they focus on.” 

Once everyone had left the room and moved on to the next, Hoffman stayed back. With his head down, minimal eye contact was his thing, he asked my husband and I point blank if he could be Henry’s primary doctor. Saying that he was so fascinated by his case, and how complex he was, he wanted to be the one that was making the calls and ensuring that Henry’s care was top tier. There was no hesitation with us, it was an immediate yes, and then gone with the wind he flew off to the next sick kid down the hall.

Our nurse sat there and said “he never asks to be a part of cases on the unit, he is so busy, that was a huge for you guys and for Henry.” At that moment I looked at John Paul and didn’t know if I was like “oh yay go us” or “like holy cow our kid has to be really sick.” I think looking back it was absolutely the ladder. 

After what felt like months, truly only weeks we were finally getting our routine again. We had gotten a room at Ronald McDonald House that was attached to the hospital by a bridge after a week of living out of a hotel. The first room we stayed in was the size of my freshman dorm, to say that it was by far the most humbling experience living in a group home, where you share your meals in a family kitchen, you can’t have food in your room and no liquid outside of water and breastmilk was a vast change of pace from us living in our home and going to the hospital to see Henry. It took some time for us to adjust and we knew we were going to get moved over to the long term side of the house, where there was larger rooms with space for family and guest to stay with you, private kitchens that gave you way more space to store your food and make you feel like you were actually living at home. But that didn’t come for 40 days, but when it did and we finally had space, it was so freeing. 

Once we had the larger room, my husband was able to work out of our Ronald Mcdonald room more. My routine every morning was the same. Something about the stability of that brought me a lot of comfort. I got up, most mornings would go across the street to the gym that we joined and workout, grab a coffee, shower and put my headphones in and make the walk to West 3 for the day. Most days I'd listen to music, or maybe a funny podcast just to get my mind out of the darker spots. Transplant listings are intense, you're in this cortisol spiking mindset that every time your phone rings it “could be the call.” 

So it began, the waiting. Everyday felt like a rollercoaster. Somedays there was a lot happening with Henry, which if I am being honest wasn’t what you wanted. You crave the quiet days, where he is able to do OT, PT and rest his tiny body. The first few weeks were many busy days, letting the new team get to know him, his quirks and how he handles medications and changes to them. Learning his blood pressure swings and how his sick heart handles its day to day. After a few weeks it was determined the safest option was for Henry to undergo another open heart surgery to place pacer wires. The reasoning being his heart was so sick that the rhythms it would get “stuck” in were dangerous and there was no other option than to let the team have full control. Think of it like a pace maker but one that sits on the outside of the body with a little box where the team can switch the knobs as they please when they see his heart rhythm not where they want it.  

A procedure we were told would take 1-2 hours at most, little did we know this would be the one that would totally change our babies life. After an hour, all things were going great and they were going to close Henry’s chest up, for us this was a weight that felt like it was lifting. My mind “he did it again, made it through #4.” But as soon as that thought entered my mind, the alarm that every medical mom knows, code blue OR went off. Everyone went running, the team that was working on Henry, we watched sprint through the swinging doors, on their way to save him. 

Dr Hoffman was Henry’s Anesthesiologist that day. He said that when they went to close Henry’s chest, he noticed on the monitors that something wasn’t right. Things were starting to drop and this is when he hit the button and started to perform manual CPR. Henry was placed on ECMO and what was a 2 hour straight forward day, turned into 16 hours of life saving measures to stop the bleeding that was coming from Henry’s chest. This was the day I knew I would never forget. Dr. Raskin came in, one of the transplant doctors, hands over his face, his OR scrubs on, and placed himself in the empty corner of Henry’s ICU room, apologizing for the decision he made to have Henry get pacer wires surgery. I looked at him and told him to not apologize, there is no way to predict these things from happening. Henry is always going to throw a wrench, and in my mind I knew this was happening for us. 

16 hours later, Dr. Mitchell, the Heart Surgeon came out and told us “it’s a miracle he’s not on life support anymore. The work we did in his chest to clean out the veins that he grew and doesn’t need is what is going to make this transplant successful, if that would have happened during his transplant, we would have lost him. What a God Send.” 

The next few weeks were waiting for him to make a recovery, what that looked like, and then determining if he was still a viable transplant candidate from any brain damage that may have occurred. The longest two weeks of my life. I just wanted my baby to wake up.

Where it all Began

“Your baby has Hypoplastic Left Heart Syndrome, and they will require 3 surgeries at least by the age of 3 if they survive their birth.” And then my ears rang, the room went blurry and I could only hear my heart pounding in my own chest. 

I was 21 weeks pregnant, with my first baby. No one ever told me that things go wrong in this phase. Yes, I heard miscarriage, I heard that at 10-12 weeks you have a blood test and that rules out all potential concerns for an unhealthy baby. I thought we were in the clear. Mind you we were also in the thick of covid. This was the first appointment that my husband was allowed to be in, only because there was a concern with Henry’s heart. Other than this appointment, I had been alone, every scan, every doctor appointment, by myself. 

After 2 hours of learning about HLHS, the surgeries, the life expectancy, heart transplant that will eventually happen if he survives and then the most shocking choice we were left with, do we want to continue on with the pregnancy? Now, in the moment I was so taken back by it, being that I was never going to even consider it. I was keeping him, giving him the chance to live and show us what life he was going to live, whether that was short or long. But, being removed years from that moment now, I understand and respect that option now more than ever.

My husband and I went home, spoke with our families on the information we were just given and tried to digest all that had just unfolded. We spent the next few weeks researching outcomes and scouring social media for stories of hope. For that one piece that would give us the push to keep going. That is when we stumbled on Greg Olsen’s page, the former Tight End from the Carolina Panthers whose son had HLHS and they had started a foundation called the Heartest Yard. One that raises funds for research for CHD in the Carolina Community. We found our hope.

In that moment, we learned about their son TJ, one of their twins they had that was born with the same heart condition that Henry would be born with. He was through his first 2 surgeries and living life, doing well. We both felt this hope that Henry could do the same. 

Henry was born November 2020, after 33 hours of labor he came into this world by emergency C section. He was whisked away by a team of nurses and doctors to the NICU to start life saving medications and procedures. I do think one moment I was prepared for was this one, the loneliness that came with being in the OR with just a medical team while my husband was with our son and watching them tend to Henry. While I was in recovery, he was watching them stabilize our first son in a room full of small, mighty warriors all fighting different battles. 

Henry spent less than 24 hours in the NICU, before he was determined too critical to be there and was moved to the CVICU. The team felt it was much safer for him to be monitored under their watch ahead of his first open heart surgery than those in the NICU. The goal was to get him to a week old before he had his Norwood procedure, the first of the 3 planned palliative surgeries that HLHS kids have in their journey. This being the goal because it allows the body some rest after the trauma of delivery, some time to eat and bond with your parents. After all, it is open heart surgery and like everything else, there are risks. 

The day before Thanksgiving 2020 we handed off our 6 day old baby boy to a team we barely knew to fix his half a heart to hopefully make it function just enough to its next surgery. Enough for him to come home and grow a little, get a little stronger, meet his family, spend his first Christmas not in a hospital. One thing that you sign up for as a heart family, especially one that is in the category of complex heart disease as we are, is that you are signing up for multiple surgeries and usually within that first year of their life. You are hoping, if you’re lucky it’s only two. But, in life, nothing is guaranteed and everything comes with complications and we learned very quickly Henry was going to do everything on his own terms. 

The Norwood Procedure took all day, Henry came back to his room with an open chest, which for the first time was a very jarring experience. Seeing a heart beat from the outside of the body is not something I advise everyone should see in their life, especially not one of your children. There are moments in your life that shape and change you, looking back I know that was one that humbled both me and my husband. 

The amount of wires, tubes, machines, beeps, medications, lights and chaos that surrounded this 8 lb baby was insane. The PTSD that haunts me to this day when I hear any of these sounds is one most heart parents bond over. The math, the minds, the amount of knowledge that went into every single heartbeat that this infant had in the moments after this surgery was incredible. The 24-48 hours after every open heart surgery are the most critical. It is usually when most things go wrong, when surgeons have to go back in, when the bleeding is still happening and when patients are the most unstable. At this point, we were running on no sleep, caffeine and hope that Henry would just make it through the night. Mind you, I'm still recovering from a traumatic delivery and I myself was just discharged from the hospital. We decided to go back to the apartment we rented across the street from the hospital to get a few hours of rest, knowing that if anything came up, the team would call us and we could be there in 2 minutes. 

Within a few days, tubes and wires started to slowly come off and Henry was starting to move. They would allow him to wake up, start to give him little amounts of breastmilk through a NG tube in his nose and start to trial him off his breathing tube that was in his mouth. All signs pointing towards the heart surgery they just did and the new medications he was on were working. Within 2 weeks we were moved to the stepdown unit, one step closer to going home. This is where we learned how to give medication to Henry, how to feed him, the cues when his heart was tiring out and how to work a pump on his NG tube. All things as new parents that felt so overwhelming. I remember turning to my husband at one point and being so frustrated because we had friends that were having healthy babies, and within days they were going home, breastfeeding them, sleeping in their own beds. No monitors, no doctors with spreadsheets, numbers, medications, surgeries and the words “when he is listed for transplant” running through your mind every other minute. Some days felt really lonely, not to mention it was a global pandemic, which at that time if children like Henry got COVID it was a death sentence.

After 28 days, we went home. Which to many was a huge surprise. Henry was eating great, taking his medications well and overall handling the life of a single ventricle baby better than expected. We would have appointments 3 times a week and were required by the team to keep a log of his medication doses, how much he was taking by mouth, his oxygen saturations, his heart rates, how many wet diapers and how long he was sleeping. They would call us almost everyday and depending on those calls and appointments those weeks would determine the next week for frequency of visits and calls.

If I told you I had postpartum depression and anxiety would you be shocked? 

My husband and our families were thrilled to be home for the holidays, it was such a sweet moment in time. Everyone quarantined to meet Henry, wore masks to hold him and took the extra care to really be around such a special little boy. My mom moved in with us, learned his schedule, how to pull meds to be of assistance however she could. My mother in law would have us leave our laundry out and she would come pick it up, clean it, return it folded and bring food, come clean whenever and take care of our dog for us. We had neighbors that looked out for us, started a meal train to make sure we were fed, we had friends that always made sure we had food and gift cards to get coffee when we were at the hospital or going to appointments. 

Henry was home for about 2 ½ weeks before we had to rush him back to the hospital. Many have heard me talk about how much I hate New Years. It seems to be because the Holiday has never been good, it has been spent in an ER or a hospital room. We rang in 2021 in the ER, hearing our 1 month old baby needed emergency revision surgery on the Norwood he just had. We were devastated. The next day, Henry was rushed to surgery, placed on bypass and repairs were once again made to his tiny heart to save his life. This time it felt like my husband and I had no time to grasp what was happening, but we trusted our team and knew they would fix it. The day was long, he came out yet again with an open chest and we started that clock over. We went through the critical 48 hours, but this time we were seasoned veterans it felt like. We weren't in shock anymore, we weren't listening to doctors talk in rounds and weren’t having to ask follow up questions to our nurse about what it all meant, we knew. We were understanding what numbers on monitors meant, what good ones were, what bad ones were. What pain meds were for and what medications were for what in the body. All of sudden we were in the step down unit again and it was 27 days later and we were going home. The second time around we blinked and it was over.

Trauma has a weird way of making you block things out and then when you have to do it again you just man up and do it.

This time we got home and life finally felt stable. We were able to space out appointments to once a week and calls to every other day. We could get Henry into Physical Therapy. He was starting to finally get caught up. He came off his NG tube completely, was taking all his formula by mouth, all his medication by mouth. He was thriving. But like I have said, Henry always did things in his own fashion, when he was scheduled to go in for his pre surgery catheterization for his next planned surgery, the night before he looked off to me, something didn't look right. We called the team and they asked us to take him to the ER. Once we were there, he was immediately moved to the CVICU, his heart was once again quickly failing. For a baby that was thriving, you would have never known his heart was giving out. Again, the next day our sweet baby went for his third open heart surgery in 4 months. This time under a new surgeon, who said he wasn’t going to put a bandaid on a bullet hole, but fix the problem once and for all. After 16 hours, Henry came out on ECMO, a form of life support. His little body was tired. We were assured it was a form of rest to allow his body to recover for maybe 2 days. Unfortunately, when the team tried to get Henry to come off ECMO his blood pressure dropped and it was showing he may never be able to come off. We were brought into a conference room, surrounded by many people that had been working with our son for the last 4 months. Opinions, many different ones and there were two women that were in the corner that we didn’t know, that were the loudest. Looking back now, I have since apologized to them because I was so resistant to them. But they demanded that Henry be listed for Heart Transplant and moved to a facility that could transplant because oh kicker, the hospital our son was sitting on life support at as of that week was no longer allowed to do pediatric heart transplants. Talk about being kicked while you're down.

When my husband and I heard this we both just stared blankly. I got that feeling in my ears where they rang again and all I could hear was my own heartbeat in my chest. I remember just asking everyone but our trusted doctors we had worked with the most stay in the room. It was the people we leaned on, they would be honest. Everyone else left and I remember very bluntly saying, do we do this and where? 

Those doctors are the reason we stand where we stand today. My husband and I could have walked away at that moment. We could have just been done and said enough, but we knew and those men knew Henry wasn’t done yet. 

To get to another facility is not the easiest, it takes a lot of paperwork and applying. So while we were submitting to all these hospitals around the country and the head of transplant was calling for them to take Henry, the team was prepping to take Henry back to the OR to try one last time to get him off ECMO. The hope was getting his chest cleaned out, he would be able to come off. One thing about transferring anyone on ECMO is it is very high risk and a lot can go wrong. Knowing that Henry was going to be life flighted, getting him off was going to be the safest option. 

As many of you that have followed our journey from the start, you know we would ask all of our friends and family to light candles on surgery days. It was a form of unity for us to all be in prayer over Henry. A wave of light the team and surgeons would repair him and he would come out okay. When Henry went back for this chest clean out, I remember asking our family and friends to please light a candle, to lift Henry and his medical team up, for this to work and for him to come off so we could safely transport him. We knew that the chances of him coming off were slim to none, the surgeon was confident, but he told us as sick as Henry was that he may just need ECMO until he gets a new heart. 

We sat in his CVICU room and waited. This time, updates weren’t coming from nurses. They were coming right from an ICU attending. The one that we have trusted all this time, it was make or break and they knew it. After 45 minutes, he came in and said “I don’t think I believe this, but Henry is off ECMO.” “Hang on, I have to go see this for myself, I'll be right back.” The shock and joy that flooded my body is indescribable. I held my breath for what felt like an hour, it was no more than 5 minutes later and he came running back in and said “HES OFF ECMO.” “HE’S BEEN OFF FOR 30 MINUTES.” We jumped, we cried, we all hugged, that was the day that candles became our “thing.” It was the day that Jersey Mikes became the only sandwich we ordered on surgery days, and we order the same sandwiches every time. It was a miracle. The surgeon never admitted this directly to us, but a birdie in the OR told us that when he successfully got Henry off ECMO and he held his saturations, the surgeon was jumping up and down, himself celebrating in pure joy that he saved this little boy. I know that this surgeon knows who he is and is out there somewhere, we see you, we love you and appreciate what you did for our boy. 

The days after Henry coming off ECMO, he actually was recovering beautifully. He started to wake up. He was still in critical condition and we were still applying to be transferred to another facility for transplant. There was a brief conversation about him having the Glenn Surgery, the next surgery in the planned HLHS surgery, but we ultimately made the call that if he was going to have that, it was going to be at the next hospital that was also able to do a heart transplant.

We sent Henry’s records to many institutions across the country, we didn’t care where we had to move to in order to make sure the care he got was the best. Almost every single one turned him down. He was too sick, too high risk and in their words “never make it to transplant anyway.” The one option we had was to go Mayo Clinic in Rochester Minnesota, which to most you would think is amazing, but at that time the pediatric heart transplant program was just starting and Henry would have been one of their first cases and their youngest. The transplant director at our current hospital had one more call she wanted to make to a friend at Children's Wisconsin in Milwaukee. Their program was known for taking on sicker children, it was a longer standing and successful program and they were well known for their HLHS to transplant success rates. The glimmer of hope felt like it was coming back. 

Within a day we had word that the team at Children’s Wisconsin would take Henry. Milwaukee only being 5 hours from home was a lot better than almost everywhere else we were looking. Not to mention, the belief this team had in our little boy.

The week leading up to getting Henry to Milwaukee was a whirlwind, we couldn’t be interviewed, listed for heart transplant until we were physically in Milwaukee, so we had to make sure that we got Henry there alive first. The chances of him dying in transit was about 60% and we were trying to decide if it was safer to fly him or go by ambulance.

With insurance and a team of doctors and one early morning in May of 2021, our little boy was taken via life flight from Minneapolis Minnesota to Milwaukee Wisconsin. I remember walking in his ICU that morning and his primary nurse looking at me and all the people surrounding his bed saying its go time and the attending doctor saying “you can’t go on the flight, you and Barret need to get in your car and get to Milwaukee as fast as you can, I have already called them and let them know you are on your way.” At this rate we were trying to beat our son's private plane to Milwaukee. 

I didn’t even get to say goodbye to any doctors or nurses, no thank you’s or hugs to the people who did all they could to save Henry’s life. Off we went to the next phase of this journey and where we would spend some of the darkest days of our life, but what ultimately led us to the most incredible people, beautiful moments and the story of Henry’s 116 days on the Heart Transplant List.