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July
17
2021

Thank You For The Miracles

Family and Friends, 

I am writing this from my kitchen table while enviously watching Charles and James take a nap in the living room. I am hoping they will give me a few minutes to finally provide a comprehensive update and a long overdue letter of gratitude. 

Charles and James are one day shy of being two months old (2 weeks old adjusted age for prematurity), which means nearly two months ago we were granted what can only be described as a miracle. 

In order to properly explain this, I need to start from the beginning of this journey. 

Around 16 weeks gestation, Jacob and I were sat down and told the words no parent ever wants to hear in that situation, "there appears to be an issue."

At the time, doctors believed the issue was twin-to-twin transfusion syndrome, or TTTS. The solution to TTTS is a risky surgery that severs the vessels connecting the twins. 

Over the next few weeks we saw our scans get worse and worse, inching towards the need to intervene and perform the surgery. I cried myself to sleep almost every night.

We shared what was going on with the world, hoping that a friend's vision of a "stadium full of people praying for the twins" would come true. 

Remarkably, the TTTS began to clear up, after doctors were certain we'd need the surgery any day. 

There was no explanation for how this was possible. 

Fast forward to 23 weeks, and we were told Charles had a severe case of selective intrauterine growth restriction, or sIUGR. His connection to their shared placenta was so bad that we were told we'd "be lucky" to make it to 28 weeks.

Here's the kicker: their shared connection was SAVING CHARLES. The same shared connection we would have mistakenly severed had the TTTS not miraculously gone away. The solution for TTTS would have resulted in the accidental and tragic death of Charles. 

One day after receiving the sIUGR diagnosis, I went into preterm labor. I instantly took to social media to share what was happening, begging for prayers. Had our boys been born that early, their survival, especially Charles', would have been slim-to-none. For the next nine weeks I remained in on-again-off-again preterm labor, never once tipping over the edge to a point where they could not stop the inevitable. 

There was no explanation for how this was possible.

Each week that passed defied every percentage and odd we had been given. 

We passed 28 weeks. 

We passed 30 weeks.

We passed 32 weeks. 

There was no explanation for how this was possible.

Finally, at 33 weeks and four steroid shots, we brought our boys into the world. 

We didn't know if they'd make it. We didn't know if they'd suffer severe consequences. We didn't know what would happen. But we knew we had a "stadium full of people praying for the twins."

Jacob sat ready with a bottle of holy water in his pocket, trained by our priest in how to baptize the boys should they take a turn for the worse. 

The moment they took Charles out he filled his air with lungs and instantly let out a strong, loud cry, as if to say, "I AM HERE MOM! I MADE IT!"

James took a moment to cry, but when we finally heard him take a breath and let it out, we took a deep breath with him. 

The neonatologist looked our doula in the eyes and promised her we didn't need to baptize them, they were stable. 

The twins were wheeled off to one wing of the hospital, and I was wheeled off to another. Eventually, we were given notice that they were on oxygen and doing better than anticipated. 

What followed were four weeks in the hospital weaning them off several life-saving interventions. First oxygen, then IV nutrition, then feeding tubes, until eventually they were eating and breathing like normal babies. 

We were told not to expect them to come home before their due date of July 4th. 

They came home four weeks earlier than anticipated. 

There was no explanation for how this was possible. 

And now, we sit here, a family of five, gratefully working through the beautiful chaos that is our new life. 

We sit here, a family of five, reminded daily of the power of prayer. 

We sit here, a family of five, in awe of the absolute miracle we have been given. 

Because of all of you.

Because of your relentless prayers. 

Because of your unwavering faith. 

Because of a merciful and benevolent God. 

Thank you. 

Sincerely, 

Julia, Jacob, Adam, Charles, and James Coleman. 

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April
16
2021

Watching A Miracle In Real Time

Family and Friends, 

When we made the decision to share our story with Charles and James, we did so with the hope that thousands of people would lift them up in prayer, and that God would grant us a miracle. 

We decided we would share the good, the bad, and the ugly. We would be fully transparent to prevent the spread of misinformation, and to make sure that those who wanted to offer specific prayers had the information needed to do so. 

Today, for the first time in a long time, we have good news to share, and my soul feels as bright and sunny as the skies outside right now. For the first time in a long time, it doesn't feel like there are 50 lbs of dread sitting on my chest. For the first time in a long time, I feel I will be bringing two beautiful little boys home.

Four weeks ago we had our last growth scan, which revealed Charles was severely growth restricted (a condition called sIUGR, or selective intrauterine growth restriction) due to his lack of access to the placenta. Keep in mind he and James are identical twins, so should be the same size. At that scan we learned James was in the 95th percentile, and Charles' abdominal measurements were only in the 7th percentile (anything below the 10th is a red flag), showing his organ growth was starting to take a dangerous hit. He was also showing issues with blood flow, and the issue with their fluid levels kept going back and forth. 

We were given a grim outlook for Charles, which could result in the death of one or both boys. 

Today we had another growth scan, and we watched a miracle unfold before our eyes. 

Charles is out of the red zone. His abdominal measurements put him into the 13th percentile, and he has not shown issues with fluid or blood flow for over four weeks. He weighs about 2 lbs. 

James, as usual, is our little giant, weighing in over 3 lbs and sitting at the 93rd percentile. 

The doctors still cannot tell us what type of ramifications this will have on Charles long-term or if he'll face any physical or mental disabilities, but they are blown away by how great he is doing. 

For now, the plan is to keep checking on their organ function and blood flow several times a week, and to check their growth again in a few weeks to determine how far we can push this before they have to be delivered. Both boys were informed that mom will buy them each a car for their sixteenth birthdays if they can hang on until 33 weeks, the day after the legislative session ends. 

The boys are defying all expectations, all statistics, all odds against them. We are firm in our belief that it is the countless people praying for them that is making this a reality. Please hang in there with us a few more weeks, as each day they continue to grow is a day their chances of survival increase. 

We cannot thank you all enough for joining us on this journey, for your fervent prayers, and for helping us bring these little miracles earth side safely. 

Sincerely, 

Julia, Jacob and Adam Coleman

April
3
2021

The Weekends Are The Hardest Part

Family and Friends, 

Thank you for your patience in receiving an update on Charles and James while we have been learning to accept and navigate our new set of circumstances. 

In our last post we explained how Charles is suffering from Selective Intrauterine Growth Restriction (sIUGR), and both boys are being monitored for Twin to Twin Transfusion Syndrome (TTTS). We were so happy that the TTTS had been remaining stable, and even disappearing, only to be crushed by the news of the sIUGR. 

Less than 24 hours after learning about the sIUGR, I began to show signs of preterm labor, and needed to spend some time at Abbott to try to stop it. The doctors prescribed a round of steroid shots to grow their lungs in case of early delivery (which made me feel like I just drank seven Red Bulls), and a magnesium IV drip to try to stop the preterm labor (which made me feel like I had been hit by a truck and had the flu - a very interesting combination to say the least). I spent most of my time in the hospital working and half-watching March Madness, but all four of my brackets were quickly annihilated and could not be resuscitated. 

I am so grateful for modern medicine. We were able to stop the preterm labor symptoms, and I truly feel like we dodged a bullet. I don't believe Charles would have been okay if they had come that early due to his small size. 

Over the last few weeks we have continued to monitor the boys several times a week via ultrasound. We check their fluid levels, blood flow, organ function, and more. We thought the TTTS was all but gone until Thursday, when their fluid levels started inching in the wrong directions again. Next week we start more closely monitoring their hearts in addition to the ultrasounds.

In regards to the sIUGR, we use the information we receive at each ultrasound to determine if Charles is better out or in. Each time that the scan shows he is remaining stable we take a sigh of relief. We are prepared to deliver the boys, with our hospital bag packed and care lined up for Adam, but I don't think we'll ever be "prepared" for our boys being rushed off to the NICU, and to see the inevitable striking size difference between our identical boys. We will just have to deal with it when it comes. 

We did meet with the neonatal team at Abbott, and left feeling like our boys will be in the best hands possible, even though those hands will not be our own. It was hard to hear about all of the medical interventions they will face immediately upon their arrival into this world, and a bit intimidating to learn about the 20 people who will be in the room as I'm being operated on during delivery, but we trust that choosing Abbott and their unmatched NICU is the best choice we can make for our sons. 

We hold our breath before each appointment with our maternal fetal medicine specialist until the sonographer confirms their hearts are still beating. It's hard to walk into an appointment having no idea if my sweet Charles passed in my womb since we last checked on him. It feels like the only things that give me the strength to walk into those appointments are my faith in God and my love for my children. The weekends are the hardest, as it is the greatest span between appointments. During the weekends we only have kick counts to determine if the boys are still in there. I think I can tell the difference between their kicks. James feels reminiscent of when Adam was kicking me, and Charles feels much softer and weaker, but it is by no means a scientific and sure way to tell if they're hanging in there. 

There is one sonographer in particular who knows our case very well. She always makes time to get us 3D photos of the boys, just in case. While the boys should look exactly the same, you can tell Charles' face is more sunken in due to his lack of access to equal nutrition and blood. They both look so much like their older brother Adam. Same nose, chin(s), cheeks, etc. 

Despite the heavy cloud hanging over our heads, we have never felt so much love and support in our lives as we do now. We can't thank everyone enough for their prayers and for checking in on us. While we are currently in a holding pattern, we know that the instant the doctors say the boys must come out (which could be any day between now and six weeks from now - a wonderful exercise in growth for me, who has to plan everything), that we will be surrounded by loved ones in prayer and support. 

One can't help but step outside this weekend, feel sun on their face, and know that God is good. He holds us in His warm embrace through thick and thin. We don't know what is going to happen over the next few weeks, but we do know it is all a part of His plan. 

Wishing you all a beautiful Easter, 

Julia, Jacob and Adam Coleman.

March
18
2021

Charlie Needs Some Angels

Family and Friends, 

I write this update this morning with a stomach in knots, and a heart that is heavy. 

If you recall, doctors have been concerned about two different issues for our boys - Twin to Twin Transfusion Syndrome (TTTS), requiring us to check on their fluid levels two to three times a week, and Selective Intrauterine Growth Restriction (sIUGR), where we check in on their size once a month. 

We are happy to share that regarding the TTTS, things have been remarkably improving, with Charles doubling the amount of fluid he has. James has also seen a large increase in fluid, which pushes him way, way over the edge of the maximum amount they want to be seeing, but his big, strong heart seems to be handling the extra fluid just fine. 

Yesterday we checked on the boys to measure their growth and size for the first time in four weeks. We received crushing news. 

At the last size check, James was measuring in the 98th percentile, and Charles was measuring in at the 54th percentile. While it's not great that they had such a big size discrepancy, it was still an okay situation, as Charles was still larger than the average baby. We were informed that if Charles ever got below the 10th percentile, we would need to change our plans. 

We learned yesterday afternoon that James is still a chunky little man hanging out in the 95th percentile, but Charles' abdominal measurements are at the 7th percentile, which doctors explained means he is not only severely growth restricted, but that his organs are paying the price in that restriction. 

Needing to attend the appointment alone, I tried my best to maintain my composure while thinking up every question I should ask, and that Jacob might want asked as well. 

I learned that we need to be more vigilant than ever in monitoring the boys, especially Charles. In order to not have too many days between appointments, I will be heading to Abbott this weekend to keep an eye on Charles until our maternal fetal medicine clinic opens back up for the work week. 

I learned we need Charles to make it a few more weeks so we can begin preparing the boys with steroids for an early delivery in order to give him a fighting chance.

I learned there is only a 35% chance he'll be born without lifelong complications.

I learned that if Charles passes away in my womb, that James could suffer a stroke, or worse, death.

I learned that we are no longer looking at a delivery without NICU time, and our boys will face a long road after their arrival earth side. 

I learned that if Charles needs to come out before 28 weeks, we do potentially have the option of letting Charles pass and giving James more time to get to a safer due date. But we will not choose between our boys. Due to the potential risks James would still face, and our belief that James would want to stick it out with his brother, we will choose to deliver both boys if and when Charles needs to come out. 

I have never been more grateful to have a demanding job and a demanding toddler, as they keep my mind focused for fourteen or more hours a day. I am still committed to serving my constituents and the State of Minnesota with all that I've got, and giving Adam all of my love. But even with my mind focused, it is hard not to think about our little Charles and James. 

For now, we need prayers that Charles can hang on as long as he possibly can so that the boys can have as much time to grow as possible. We need prayers that God and his angels surround Charlie and carry him to a safe delivery date. 

We need prayers James will be protected throughout all of this. 

We need prayers for strength. Strength for each other, strength for our boys, strength in our faith. 

Thank you for coming on this journey with us.

Julia, Jacob and Adam Coleman. 

March
8
2021

Taking It One Day At A Time

Family and Friends, 

I wanted to start this note by thanking you for continuing to pray tirelessly for our little Charles and James Coleman. Your prayers have gotten us to this point, and for that we are so grateful. On behalf of Jacob and myself, we would also like to thank those who have sent care packages, meals and words of encouragement. You have kept us going. 

In my last post I noted that I would provide an update if anything changed in their condition for better or for worse, but with many holding their breath waiting for news one way or the other, I felt I should provide an update regardless of outcome. 

It is both unfortunate and fortunate that we have not seen any significant changes. The boys are still facing twin-to-twin transfusion syndrome (TTTS) and selective intrauterine growth restriction (sIUGR). Charles still remains significantly smaller than James with much less fluid, and James still remains far over the maximum amount of fluid that they would like to be seeing, giving us concern for Charles' overall organ health and development, as well concern for James' heart being able to handle everything being thrown at him. 

We continue to ultrasound the boys multiple hours a week, checking on their fluid levels, blood flow, and organ performance. Jacob has become quite skilled at understanding exactly what the sonographers are looking at - he knows what all the measurements mean, which numbers are "good" or "bad" and often knows what type of news we will be receiving long before the doctor consults with us after the scans. 

We continue to sit at a point where it is safer for them to keep an eye on the boys multiple times a week, rather than attempt to resolve the issue through surgery. We were also informed that because Charles has such a small share of the placenta, that his and James' connection to each other might be the only thing keeping him alive. The surgery in question would sever their connection to resolve the TTTS issue, but could actually end up killing Charles by making the sIUGR issue worse. 

We pray that they continue to remain stable. If the TTTS gets worse, we would have to choose whether to risk Charles to save both boys. If the sIUGR gets worse, we would have to choose whether to risk both boys to save Charles.

I find myself most evenings begging God not to put that choice in my hands. Like most major events and concerns in my life, I selfishly am asking the Lord to take this cross off of my back and onto his own. I try my best to remain strong, but find little things like questions about their due date (a sensitive topic given the uncertainty we face), or strangers commenting on my pregnancy, cause small pangs to my heart. Faith and family have held me up, and I know that holds true for Jacob as well. 

For now, we are continuing to take everything day by day. We take it appointment by appointment. Our maternal fetal medicine team has gotten to know us very well - they have even been exposed to the committee hearings and floor sessions I have had to bring into the ultrasound room with me (the attached photo is me working during one of many ultrasounds last week - one a senate colleague has dubbed "one for the baby books!"). 

We decided to start taking small steps to prepare for the boys, rather than fearing that those efforts would all be for nothing. We started looking at minivans and houses, and have started slowly ordering things like preemie diapers, pajamas, etc. It feels good to prepare for their arrival, even though we remain uncertain. 

Thank you again to everyone who has reached out and prayed - we continue to ask for nothing but prayers that our sweet boys make it home unscathed. 

Sincerely, 

Julia, Jacob and Adam Coleman. 

February
19
2021

Teetering On The Edge

Friends and Family, 

The nights before our appointments to check in on Charles and James are always a bit nerve-wracking... there are a number of things we need to prepare for and several boxes we need to check off in case our scans the next day show our boys have tipped over the edge to the need for intervention. We are often a bit quieter those nights... deep in thought as we bathe the baby, make our travel arrangements, hop into bed and say our prayers together as a family - always praying for our sweet twins. 

Today we had our first consult at Mayo Clinic. I woke up this morning realizing that I had only been to Mayo a handful of times - once to support my father-in-law during a major operation to remove his cancer, and a few visits in my role with The Medical Alley Association. Never before had I walked in the shoes of the thousands of patients that travel to Mayo Clinic each year filled with both anxiety and hope. It was a very different experience waking up early, parking, and walking into the appointment as parents hoping to hear that our little boys are going to make it. 

I was immediately filled with reassurance that we were receiving top-notch care when the doctor came to scan the babies himself, rather than relying on secondhand scans and reports. He looked at every inch of the babies and the environment they are growing in. He spent nearly two hours with us, answering each and every question that popped into our minds. His presence alone was soothing, and it was something Jacob and I desperately needed. 

As we have become accustomed to during the TTTS checks, we received a mix bag of results. The good news is that their fluid levels are remaining stagnant - with James still over the maximum amount of fluid they want to be seeing for babies at this stage, and Charles still sitting right at the minimum. They have not tipped over the edge to needing immediate intervention, and each day that they can grow untouched and unscathed in my stomach is a day we are so grateful for. The somewhat bad news is that when measuring their size, they are showing signs of something known as Selective Intrauterine Growth Restriction (sIUGR), caused by Charles having a very small share of the placenta compared to James. Charles is still much smaller than James, and unlike TTTS, the only treatment if it gets to a life-threatening point is early delivery. 

For now, nothing changes for us. Both Mayo Clinic and our local maternal fetal medicine specialist are advising us to continue checking on the boys multiple times a week to make sure they don't quickly tip over the edge, showing signs of worse fluid levels, or God-forbid organ shutdown. 

It feels like we are standing on the edge of a cliff on a windy day, holding our breath hoping a gust of wind pushes us onto solid ground rather than off the edge and into oblivion. But we both agree we would rather sit here on the edge than the alternative. 

We don't know what the coming days or weeks hold for us. Right now all we know is we'll be spending a lot of time in ultrasound rooms, holding our breath and saying our prayers. 

We continue to remain hopeful and prayerful that we are bringing both Charles and James home unscathed. We have no idea how early that will be, we have no idea what lies ahead of us, but we have faith. 

Thank you to all of those who have reached out and lifted us up in prayer. We truly feel these little boys are being prayed for by thousands of people, and are convinced our strength is a direct result of that. 

We will continue to provide periodic updates, especially when or if anything tips one way or the other for our sweet little Coleman twins. 

Sincerely, 

Julia, Jacob and Adam Coleman. 

February
17
2021

What's Up With The Coleman Twins?

Hello Friends and Family, 

This is Julia writing. Many of you have expressed concern about being left in the dark, seeing only our request for prayers, and were frustrated at not knowing more. For that I apologize. I spent the last week bouncing back and forth between denial, anger and depression. I wasn't ready to lay out the nitty gritty details. I wasn't ready to accept the situation we were in. But after the news we received today, I feel it's important to let people know what's going on sooner rather than later. 

A few months ago we found out we were expecting, and were both shocked and delighted to find out we were having identical twin boys. We instantly pictured our life chasing around our starting hockey line, three peas in a pod growing up together just one grade level apart. I was so excited to embrace my destiny as a boy mom and to tackle all the joys and challenges that would come from raising essentially Irish triplets. 

We learned that we had a relatively rare type of twin, known as monochorionic diamniotic twins, meaning they share one placenta, one connection to me. While this poses the possibility of a couple of disorders and complications that can come up with mono-di twins, for the most part it shouldn't impact their health. The prospect of these issues becoming reality were the farthest thing from our mind, and we started planning life with Baby A (Charles) and Baby B (James). 

Two Fridays ago we found out this nightmare scenario, this complication that likely wouldn't happen, is becoming our reality. The babies are facing a disorder known as Twin to Twin Transfusion Syndrome, which is deadly for about 90% of babies without the right intervention at the right time. Baby A (Charles) is hovering just at the minimum level of fluid they want to see a baby to have at this stage, while Baby B (James) is over the maximum amount. There is also a jarring discrepancy in their sizes, with James outgrowing Charles quite significantly. 

With this disorder each twin is facing their own unique set of challenges. With Charles, the concern is that he will not get enough blood flow, and will eventually start facing organ shutdown. With James, the concern is he will get too much of the blood flow, and is at risk for heart tears, hydrops, and more. 

There is a surgery that can significantly improve their odds, but it is fairly risky, especially this early in pregnancy (20 weeks), so our medical team has been advising us to monitor the situation every other day or so, in order to try to give our boys as much time to grow as possible. If they start to show signs of organ shutdown or their fluid levels get worse, we'll need to seriously consider surgery. 

So that's what we have been doing, monitoring, and praying. We have been going to multi-hour ultrasounds several times a week to carefully monitor our boys. Things have been remaining fairly steady, but inching closer and closer to the need to intervene. 

On Monday we learned that if things stay stagnant, we'll likely need to decide around 28 weeks if we need to risk both boys to save Charles, who will still be facing some scary odds given his tiny size. Today we learned that Charles' blood flow is starting to show more and more areas to be concerned about, and so we are heading to Mayo to get their opinion on if we should risk intervention at this point. 

We are trying our best to stay positive, while at the same time struggling with the unknown. With TTTS, things can go from bad to deadly very, very quickly, which is why we monitor them so frequently. We've put a pause on buying things you need for twins, we've put a pause on planning, we are just sitting in a state of prayer and hope. 

We originally envisioned sharing their names and stats upon their birth, but with so much unknown, we want to tell everyone as much about them as we possibly can. They are both so active, and spend most of their days cuddling or having wrestling matches in their mom's stomach, especially at 3 AM. 

When trying to decide their middle names, we decided we wanted names that would give them strength, meaning and hope. 

Charles is our little guy, who has some slightly worse odds than James to overcome. Sometimes with TTTS, when one baby is born significantly smaller than the other, the effects can be long-lasting. We just so happen to know a great man who was smaller growing up, but who grew to be a metaphorical giant. A man who seems to defy fate and beat any and all medical odds stacked against him. So with great hope and excitement that he'll follow in his paternal grandfather's footsteps, and grow into a metaphorical giant who always defies the odds, we decided to name him Charles Norman Coleman. 

James is our big guy, who needs to keep his heart strong. We will expect our larger twin to look after and protect Charles if he stays smaller. I was honored to be raised by a great man who has a big and strong heart, who has spent his entire life protecting others as a law enforcement officer, especially his family. So with great hope and excitement that he'll follow in his maternal grandfather's footsteps, using his big strong heart to protect others, we decided to name him James Brad Coleman. 

We share all of this not because we want sympathy, assistance, or anything along those lines. We share all of this because we need prayers. Specific prayers. Prayers that we bring both boys home unscathed. Prayers that they grow as long as God will let them grow inside my belly. Prayers that we remain steadfast in our faith no matter what life throws at us. 

We will update everyone again after our consult at the Mayo Clinic. 

Thank you for standing by us. Thank you for your strength. Thank you for your prayers. 

Love, 

Julia, Jacob and Adam Coleman.