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The Aftermath of Heart Surgery

February 11, 2020

I’ve been wanting to write about the topic of trauma for a while, but finding the words to describe my experience over the last six months hasn’t been easy. While we were still in Ann Arbor after Truett’s heart surgery, someone (I can’t remember who) sent me a message on Instagram telling me that it was OK not to be OK. At the time, I brushed it off. I was on a HIGH. I had seen God work in some of the most amazing ways as He guided and orchestrated each step of Truett’s diagnosis, care, surgery, and subsequent recovery. How could I feel anything but joy? As we flew home after surgery, I felt overwhelming thankfulness and had to hold myself back from telling every stranger I saw that God saved my baby and repaired his heart.

Oh the tenderness and ache I feel thinking back to who I was in those moments, so unaware of what was to come and what I would feel and process in the months to come.

It didn’t happen instantly. I don’t know when the trauma started to swallow me whole, but it did none the less. I returned home and plunged back into an intense season of parenting. Still newly postpartum with a baby recovering from heart surgery, Joe resumed a busy work schedule compounded with many hours devoted to coaching high school football. Add on top of that the fact that Truett wasn’t what one might consider the easiest baby around and it was the most depleting of seasons.

The concept of PTSD was familiar to me but I naively thought it was something reserved for those who had been to war (literally) or who experienced abuse, neglect, or traumatic loss of a loved one. It seemed self indulgent to me to identify as someone with PTSD when the outcome of our event was ultimately a good outcome.

In the months following Truett’s surgery I noticed things in me that didn’t seem healthy, but because I’ve always identified myself as being “the strong one” and because I didn’t have a lot of margin this past fall to process properly, I continued to shove the feelings aside. As time went on, I found myself increasingly agitated by the smallest things – loud noises and basic kid behavior – obsessed with keeping the house clean and, again, agitated, when it wasn’t spotless.

I’ve always had a visual memory, but following our time in Ann Arbor the images burned into my memory were in hyperdrive. I could see everything – the configuration of buttons on the medical airplane, the face of every nurse and care provider, the tubes and cords and Truett’s labored breathing. And I replayed the events of the days we were there again. And again. And again.

I became hyper vigilant. In my vulnerable state, I started to believe that it was my job to catch things that were wrong with Truett that doctors didn’t catch. My mind was searching and searching for the next wrong thing. Don’t even ask Joe how many things I was certain were wrong with Truett in the months following surgery.

Church became a hard place for me to be, too. It was the place that it all began, and every Sunday for a period of time, when we would leave Church I was even snappier and more agitated with Joe and the girls than before because sitting in that same spot triggered another replay of the cascading series of events that led to Truett’s diagnosis.

I was drowning. And yet I was trying SO hard to be OK. I was functioning, yes, but life was foggier, my excitement for things like work and family outings was muted. Basically, everything in life felt incredibly hard and I couldn’t figure out how to get myself out of the cycle I was living and re-living.

One of God’s biggest graces to me in all of this was the gift of a skilled therapist. I had intentions of finding a therapist for years, but it wasn’t until two months before Truett was born that I actually made work of finding someone to talk to about some things I felt were inhibiting me from living my fullest life. It astounds me that God had already started to give me the tools and equip me to deal with all of this before any of it even occurred. Having an established relationship with a therapist was an amazing gift during a time when I needed therapy more than ever!

Once the dust settled and the craziness of the fall subsided, the breathing room allowed me to come to terms with how I was really doing. I was able to take a true inventory of my heart and mind and work with my therapist to start to process all that had happened and the trauma that left its mark on me. I did a lot of work with exposure therapy – reading and re-reading my writings and recollections of our time in Ann Arbor so that Truett’s story would be a special part of our family’s story but wouldn’t hold undue power over me.

We also worked together on combatting untrue fear statements with truth-based statements (for me, as a believer, backed with scripture). Every time my mind was tempted to fall back into a fear pattern, I would come back to a truth statement to ground those fears in what I knew to logically be true.

Another thing I think is worth noting for other mommas in a similar spot is that it’s GOOD to be attached and responsive to your baby, especially if your baby went through something traumatic. But that you also need to take care of yourself. For me, that came in the form of personal space and sleep – two things I was getting very little of in the months following Truett’s surgery. I resisted sleep training Truett because I wasn’t emotionally ready, and also resisted leaving him. The level of emotional attachment I had was intense – but not all healthy. Some of it was VERY fear based.

Once I was ready (and encouraged by Joe) to sleep train, it was a big turning point for my mental health as I started to sleep long stretches again. Additionally, it’s still really hard for me, but leaving Truett for periods of time to work or travel is also important for me to prioritize. We can give and give as moms, but it’s important to take time to take inventory of where we are at emotionally and not allow ourselves to become completely depleted.

I hope that in sharing my story and experience with PTSD it can be helpful to someone else. It took me so long to validate the thoughts and emotions I was dealing with, but once I began to name those thoughts and accept the trauma that I was processing through, it gave the thoughts and feelings less power over me.

Would I say I’m totally fine now? Yes and no. While I’m feeling great and excited about life and more like myself with each and every day, there are still times when I find my thought process wandering. When I’m tempted to fear or fall into a pattern of thinking that could lead me down a road of anxiety. I have to course-correct and get back to those truth-based messages once again. I’m a work in progress – aren’t we all? – and I’m thankful that this experience has made me both mentally stronger and more compassionate to those around me who have walked similar roads.

PS: If you think you are dealing with PTSD or something similar, I found this website a helpful resource and encourage you to find a licensed mental health professional to work though what you are processing.

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Sinus Surgery :: 2 1/2 Years Later

January 21, 2020

It’s been 2 1/2 years since I underwent sinus surgery to help with my recurrent sinus infections and sinus headaches. Some of you probably remember when I was contemplating getting the surgery – and how many days of the year I spent crippled with sinus infections – and when I got the surgery done a few months after Collins was born.

I went back and forth trying to decide wether or not to get the surgery. Despite trying all the things to prevent + treat sinus infections in alternate ways, I was continuing to have to go on countless rounds of antibiotics to get over the infections. As anyone who has dealt with recurrent sinus infections can probably tell you, it was so hard to be a momma to two little kids and spend so many days of the year feeling sick and down for the count. By the time I got the surgery, it seemed every single head cold I got turned immediately into a raging sinus infection. Anyone out there relate?

My CT scan reveled that I had a slightly deviated septum and that some of the sinus passages were very narrow, which was causing the issues that I was experiencing. The first consult I had with an ENT said that the suggested course of action was more traditional sinus surgery that would “drastically alter the landscape of your sinuses” and require a good deal of down time and recovery, including packing inside the sinuses that would then need to be removed days later.

I was hesitant to pursue that option, for obvious reasons, and sought out a second opinion from another ENT who recommended what is called a Balloon Sinuplasty. While technically the procedure CAN be done in the office with local anesthesia, our doctor suggested that the best course of action was general anesthesia – and I agreed.

Recovery from the surgery was NOT bad at all! It basically felt like I had a two week long sinus infection. Which, for someone suffering from chronic sinus issues isn’t all that bad to deal with for long term relief. There is no packing and very minimal pain. After the Sinuplasty is performed, they rinse out your sinuses with a sanitary rinse to make sure you are starting with clear, fresh sinuses. When they went into my sinuses, he said I had “a full pond” of gunk just sitting in there. SO gross, right? But it made total sense why I would get a cold and it would immediately turn into a sinus infection. I was starting each cold already primed for an issue!

I knew from the beginning that there would be a chance, with a less invasive option, that the procedure might need to be repeated down the road as time went on to maintain the results I initially enjoyed. But so far, 2 1/2 years in, I’m happy to report that I haven’t been on antibiotics even once for a sinus infection since! It’s truly been life changing for me and for our family as they have a healthy and well mom.

Having just got over a horrible head cold that I know would have sidelined me for weeks if I was the pre-surgery me, I thought it was a good time to reflect on how I stay healthy + care for my sinuses + keep infections at bay in case you find yourself in a similar spot.

1. Rest
This is, of course, easier said than done, but I’ve tried to do a better job of listening to my body and giving it the rest it needs when I’m sick. It’s hard with three small kiddos, but I do my best within reason.

2. Hydration
The most obvious choice is drinking enough water, of course, but I also drink plenty of my Apple Cider Vinegar Mocktails (immunity boosting recipes below!)

3. Supplementation
I boost up my Vitamin D + Vitamin C intake when I can feel a cold coming on and I’m sure not to skip on my nightly magnesium in the form of Natural Calm.

4. Hot Baths + Steamy Showers
This helps relieve some of the congestion and clear the sinuses. If I’m taking a bath, then I typically add Epsom salts to the bath to help detox

5. Diffuse
While I’m not an essential oils expert by any means, I am an avid fan of diffusing blends so I have a blend of Thieves + Lavender + Lemon on blast around the clock.

6. Light Exercise
If my body is feeling up for it (if and only if!) I am not against getting in a light and non-taxing sweat session. Sometimes a little light movement can help with a head cold as long as it doesn’t tax the body too much – which would serve the opposite purpose.

7. Sinus Rinsing
I use a sinus rinse with salt solution at the first sign of any congestion or sickness coming on. It’s THE single biggest tip I have for those who are suffering from chronic sinus issues. Sinus rinsing alone was not enough to help me with my recurrent sinus infections before surgery, But now that my sinus passages are functioning properly, sinus rinsing is much more effective!

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Favorite Baby Products // Months 4-6

January 8, 2020

Hi, friends! I’m back after a little hiatus over the Christmas holiday to share with you some of the baby products we are loving lately. As I’ve looked back on our baby favorites over the years one thing sticks out to me – quality always wins! The baby products that I have loved the longest and had the best success have nearly always been the higher quality items that are smartly designed and look + feel like items that belong in our home.

As we are in the thick of the 4-6 month age with Truett, here is my list of the most beloved baby products for this age!

Ikea Antilop High Chair //
We busted this favorite out recently as Truett is getting close to the age of introducing solid foods! I LOVE this high chair, first because the price can’t be beat ($20) and second because it’s got a sleek, small footprint. It’s lasted us through two and now three kids! This time around, I plan to buy some accessories made just for this chair from the cute little shop Yeah Baby Goods on Etsy!

Skip Hop Activity Center //
This was a new purchase for Truett, after I decided I couldn’t look at our old, hand-me-down multi-colored baby activity center one more time. This is adorable and pleasing to the eye, PLUS it transitions to a kid’s table once your baby has outgrown it. So smart!

Moby Classic Baby Wrap //
I have used both the Moby and the Solly and prefer the Moby! It’s fabric is more forgiving for getting a good, tight wrap and seems to be more comfortable for Truett. Don’t get me wrong, I use and like both, but if I had to pick just one it would be this one!

Ergo 360 Baby Carrier //
Once your baby is too big for a wrap, this is the next baby carrier we use. Of course you can use it much sooner than that, but I tend to prefer the softer cloth wraps for smaller kiddos (and ease when putting in a purse) and the sturdier Ergo wrap for babies as they get older. This has many ways to carry a baby and is SO great for being out and about/on the go!

BabyJogger Summit X3 and Summit X3 Double //
We have a few different strollers but this is hands-down our favorite! It’s great for long walks and runs. We have both the single and double versions and have logged so so many miles on both of them. Highly recommend!

Itzy Ritzy Teething Rattle //
This is a much smaller dollar item product that we have loved! It’s great for this age baby as it’s easy to hold and grasp and soft for chewing on. We have so many little rattles and tethers and this is the one we reach for time and time again!

Zipadee Zip Sleep Sack //
We have the original Zipadee Zip and have used it with both Collins and Truett. It’s a great transition piece out of a swaddle and is safe for use once baby can roll to their tummy. We have Truett in a fleece one right now for winter and I love that it keeps their little hands warm!

I think that’s it! At least these are the items that come to mind first and foremost, which I think means these are the items that we use and love the most!

Madison



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Truett’s CHD Story (part 2)

November 19, 2019

Writing out Truett’s story has been the hardest thing I’ve done in recent months. I look back at these photos and find it both incredibly therapeutic and helpful to process and entirely traumatic at the same time. While we were in these days I was so focused on being strong for Truett and surviving that I didn’t have time to actually FEEL the feelings associated with what I was going through. So, it’s taken me a little time to get to part 2 because writing part 1 took so much out of me. Here we go!

Once we made the decision to send Truett to Ann Arbor we were told it might be more complicated than simply making the decision. Our cardiologist informed us she would make a call to see if they had availability to take Truett. She said they were frequently full and we would be subject to an available bed. I hadn’t event considered the possibility that he might not be able to go where we wanted to send him.

When we returned with our cardiologist to Truett’s room in the NICU, we were told that the prostaglandin was working, but only very marginally. It was enough to keep his PDA open for some blood flow to continue through his body but not what they would have wanted or expected. At a follow-up appointment, our cardiologst told me she had never in her 25 years of practicing medicine used that high of a dose of prostaglandin in a baby. Basically, Truett’s PDA was not opening well and he was continuing to deteriorate as time went on.

As we waited for calls to be made, I sat by Truett’s bedside and prayed some of the most earnest prayers I’ve ever prayed. I could tell that the medical staff was worried about Truett – about the possibility of damage to his heart and lower extremities if they couldn’t regulate blood flow, and potentially a threat to his very life. For me, the scariest part was that there was nothing Sioux Falls could do beyond what they were already doing to keep Truett alive. They didn’t have the ability to perform the surgery he so desperately needed. We needed to get Truett to Ann Arbor. Please, Lord, I prayed. Please make room for Truett in Ann Arbor.

We finally got confirmation that they did, indeed, have an opening for Truett. However, they warned us that we shouldn’t get our hopes up because by the time the paperwork processed the bed could be taken by another child. We were later told by the nurses at Mott that they had been at capacity for MONTHS and had literally discharged a couple patients the morning before Truett arrived, making space for him. It felt like an eternity waiting for the paperwork to process, and once it did I felt such a flood of relief. But the relief was short-lived when the flight crew told us that bad weather was coming in and we might not be able to take off in the medical airplane.

I’ve said this before and I will say it again, this was the single most amazing experience of my life – I literally felt that every step of the way God was walking ahead of us, pushing doors open that could have very well be closed to us. In my emotional haze, I remember just repeating over and over again, “Lord, please hold the weather off. Please let our airplane take off. Please get us to Michigan.”

The team worked quickly yet carefully to start the process of getting Truett ready for transport. At this point he had gone from being hooked up to a small amount of oxygen to being hooked up to so many different machines and medications and monitors. He also got intubated because the high dose of prostaglandin frequently caused apnea. While the crew was working as quickly as they could, the process of getting him transferred over to the transport machines took what felt like forever when we were working on a timeline.

The team informed us that only one parent would be able to travel with Truett in the airplane. We decided I would travel with Truett and Joe would take a commercial flight the next morning. When I tell you my husband is the strongest man I know, I’m not lying; Watching him say goodbye to Truett that night in the hospital in Sioux Falls was one of the single most heartbreaking moments of the entire experience. We both knew what one another was thinking – that this could be the last time Joe saw Truett alive – and yet neither of us gave voice to those thoughts. Joe took off around 10 pm to check into a hotel and try and get a few hours of sleep while I stayed with the team preparing Truett for transport. It took another 2 hours before we were actually ready to take off – and I was nearly crawling out of my skin doing everything I could to avoid shouting “Get him on that damn airplane NOW.” I felt so helpless and desperate to get to Michigan. While they were preparing him for transport, our neonatologist asked us if me if I would like someone to come baptize our son. Hearing someone give voice to what I knew to be true – that he could very well not survive this flight – took my breath away. I didn’t know what to say, so I simply blurted out, “We believe in adult baptism!” (Looking back, I can get a good chuckle out of my response. 😉 )

Around midnight we made the walk to the ambulance, then an ambulance ride through the quiet streets of Sioux Falls and to a waiting airplane. We traveled with a nurse practitioner, nurse, and respiratory therapist to Ann Arbor. I was informed that if Truett crashed while we were in transport that I needed to make sure to maintain. my distance to make sure the team had adequate space to work.

The 2 1/2 hour flight was the longest flight of my life. The transport team all had on headphones to communicate and coordinate care for Truett while in the air, so I was left to the quiet isolation of my thoughts, fears and prayers while we made our way to Ann Arbor. I could see them tweaking things and opening and closing the little box my sweet baby was confined in but had no idea if he was stable or not. I watched faces for signs that something was wrong and tried desperately to sleep to no avail. Pumping on a medical airplane may now go down as the most outrageous and over-the-top place I’ve pumped. Through the whole experience, pumping was a saving grace to me because it felt like some tiny, tangible thing I could do for Truett when I could do nothing else.

When we landed, around 3 am, I felt such a huge flood of relief wash over me. We were in Michigan. We were so close to Mott Children’s Hospital and the team who would be able to repair his aorta and give him the life saving care he so desperately needed.

It’s funny to think about the things I remember. Like our overly chatty ambulance driver who talked my ear off about Florida Gators football (he was a Gators fan, which to me felt like God’s little wink to me in a very dark time) and all the places I should try to visit while in Ann Arbor (um, thanks buddy but we didn’t have a lot of free time.) We arrived at Mott around 3:30 am and made our way up to the 11th floor – the PCTU – which is an intensive care unit specifically for cardio patients. The photo above is what our sweet baby looked like after they transferred him to his bed at Mott. Swollen, sedated, panting like a dog, fighting like the little warrior that he is to stay with us.

We had made it to the place that would perform Truett’s surgery. As they transferred him over to their machines and got the report from the transfer team, I felt my body begin to shake uncontrollably. My teeth were chattering and I was shivering. I think the adrenaline and lack of sleep had finally started to get to me when I was able to let my guard down a bit. The team of nurses wrapped me in warm blankets and brought me to an orange chair situated behind Truett’s bed in the PCTU bay where he was situated and for the first time in nearly 36 hours I fell asleep.

Part 3 to come.

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Truett’s CHD Story (Part 1)

October 22, 2019

First, I want to say that I’m writing this mainly for myself. As I’ve navigated the last two months post heart surgery and all that transpired with Truett, I’ve been blessed (or sometimes I think cursed) with a crystal clear memory of all that transpired. And before those memories fade, I want to make sure I have documented this tender, terrifying and miraculous time in our lives and in Truett’s life. Some may find this helpful, others may find it entirely irrelevant. Be forewarned that what is to come is probably going to be one of the longest posts ever to grace Espresso and Cream.

Truett was born on Friday, August 2nd at a healthy, chunky 9 lbs. 1 oz. He had Apgar scores of 8 and 9 and in all regards checked out perfectly healthy. We were discharged two days later and started our life as a family of five. Our first week with Truett at home was uneventful and filled with the typical new baby things – finding a new family rhythm, working on feeding, trying to get a few minutes of shut-eye. You know the drill.

Truett was a champ eater from the moment he entered the world, and he continued to eat and gain weight well during the first week at home. The following Friday, August 9th we had Truett’s one week appointment. He had regained his birth weight and then some, and checked out well in all regards. Joe’s side of the family came to visit us that weekend and we spent our time together enjoying introducing Truett to his cousins and aunts and uncles. That Saturday night I remember particularly well as we spent it at home, snuggled on the couch, soaking up all the new baby goodness late into the night.

Sunday morning was our first Sunday at home and after a full weekend spent with family, Joe and I were exhausted and debated keeping our family home from church. Ultimately, we decided to go and I’m so very thankful we did. As most of you with multiple kiddos know, subsequent babies don’t get as much individual attention as the first baby does. While we were in church, Collins was having a hard time sitting still, so we took her to nursery and Ainsley stayed in nursery with Collins for moral support. With our two big kiddos in nursery, it allowed us to focus our attention on Truett.

Before we had left for church, Joe had made a comment about Truett’s breathing. He said, “Is his breathing always this rapid?” We both dismissed it as normal baby breathing variances. While he was sitting in his car seat sleeping, I noticed that his breathing was, again, very rapid. I took him out of his car seat and let him sleep in my lap. The vision of him sitting in my lap is still so clear in my mind. As he laid in my lap sleeping, I continued to count his breaths per minute – they were consistently rapid. I pulled out my phone and googled “normal baby breaths per minute” and was informed by Dr. Google that it’s typical to see a range of 30 to 60 breaths per minute. I pulled out my stopwatch app on the phone and counted: 80 breaths per minute. I gave it a few more minutes and counted again: 75. I counted again: 85. At this point, alarms started going off in my head. I continued to watch him, and whisper to Joe that I thought something was wrong. He seemed otherwise fine, but his breathing concerned me.

After the service wrapped up, I told Joe I thought we might need to take him into the ER. We debated if it was necessary, and settled on calling into the nurse station. The nurse on call told me that 80 breaths per minute did, indeed, seem on the high side and was probably worth taking a look at. I loaded Truett up in his car seat, I was still dressed in my church clothes, and told Joe I would be back soon. Honest to goodness, I thought they would check him out, tell me everything was fine, and we would be home in an hour or two.

When we got to the ER they took his temp (normal) and hooked him up to check his pulse ox. His levels were a little on the low side, though still in the 90’s. They also checked his respiratory rate, which was also on the high side as I had noted. He wasn’t fussy and seemed otherwise fine. They started to run some blood work to check for viral and bacterial infections, and sent us to X-ray to check his lungs for any type of pneumonia or other issues that might be impacting his breathing.

While we waited for his results to come back, the doctor on call said that they would be moving us to a room to keep us overnight for observation. He didn’t seem overly concerned but said since he was a young baby, and they didn’t know what was going on, it was probably best to keep him for observation.

At this point I called Joe to tell him I would need to pack and bag to stay overnight at the hospital. Ainsley was with my mom, so Joe called his parents to come take Collins so Joe could be at the hospital with me. When Joe arrived we were already in our room for our overnight stay. He took over with Truett so I could run home and pack a bag. I zipped home and shoved a bunch of random items into a bag. Thankfully the nurse had told me to pack my breast pump – something I assumed was totally unnecessary at the time – but was a saving grace looking back. I made a smoothie because I was famished (#breastfeeding) and sped back to the hospital as quickly as I could. When I got back to the room they had moved Truett to supplemental oxygen with a nasal canula. For some reason seeing him hooked up to oxygen stopped me in my tracks and sent off alarms in my head.

The respiratory therapist told us that they were going to keep him on oxygen to keep his levels where they wanted them. He was doing well at that point on a low dose of oxygen and continued to seem content and peaceful otherwise. When the doctor on call returned to the room he said that the X-ray hadn’t revealed anything unusual and they were still waiting on some of the blood results. At this point, he had no answers as to why Truett was breathing rapidly or having issues keeping his oxygen levels up.

Since we live in a small town with more limited medical resources for small babies, he said we could stay for observation or we could opt to head to Sioux Falls – about an hour and a half away where they have a NICU and more advanced medical resources. I asked what he would recommend, and he said it was up to us what we decided to do. We opted to have Truett sent to Sioux Falls after being told that the extent of what they could do at our hospital was to put him on the oxygen they already had him on. I felt better playing it safe, even though it might not be necessary.

After we decided to have him transferred, things started to move very quickly. We were initially told he would be transferred via ambulance, but after they called up to Sioux Falls they opted to have him transferred via helicopter so Sioux Falls could provide their own crew of medical professionals with additional medical resources. At this point, things started to get scary to me. As we waited for the crew from Sioux Falls to arrive, I held my baby and just prayed over his little body. I remember looking at him and the thing that echoed through my mind was, “He is yours, God, not mine. I’m just the lucky one who gets to care for him here on earth.”

When the crew from Sioux Falls arrived I was greeted by two women – the nurse and the nurse practitioner – whose faces literally looked like angels to me. They were both tall (for some reason it stood out to me) and they had the kindest faces. Their demeanor and reassurances put me at ease – or as much at ease as I could be in that moment knowing I would be putting my baby into their care on a helicopter and would not be able to go with him. Things started moving really fast once the crew arrived. They got an IV line in Truett, and began taking blood to run more tests. At this point Truett was very angry about getting his blood drawn and I remember them telling me it was a good sign he was angry as it meant he had a lot of fight in him. They told me they would be running a bunch of tests – that it could be anything from a viral or bacterial infection to a metabolic disorder to a heart issue.

A heart issue. It can’t be a heart issue. There can’t be anything wrong with this heart. And yet I knew, in my gut, that it was a heart issue. Something deep inside – although in denial at the time – knew that was what was wrong.

The crew assured me they would take the best care of Truett possible and would call me as soon as they arrived in Sioux Falls. We would follow behind in our car. Was it scary to send him off with them? Yes. But at the time it wasn’t as scary as it could have been because we didn’t really know what was wrong.

As Joe and I drove together (with our bags packed meagerly for one night at our local hospital) we both tried to put on brave faces but took turns crying as we processed and prayed and updated friends and family on what was going on with Truett. We got a phone call along the way from the crew letting us know Truett did well with the transfer and was getting settled into his room in the NICU.

When we arrived at the NICU we were immediately greeted by the transfer crew who was updating the NICU staff on Truett’s case. We also talked with the neonatologist on duty who let us know that they were waiting to get the blood results back which would rule out bacterial and viral infections as well as metabolic disorders. He said the cardiology team would also come up and run an echo on Truett to look at his heart. I remember him saying, “Based on what I’m seeing, it doesn’t look like a heart issue, it doesn’t smell like a heart issue, but we need to run the echo to be safe.”

I still remember the face of the echo tech, Sam, as I spent a good deal of time studying her movements and watching her face while she performed Truett’s echo. In fact, I remembered her face so well that I remembered her when she did Truett’s follow-up echo nearly two months later. After the echo was performed the neonatologist returned to the room to tell us that Truett had a serious congenital heart defect called coarctation of the aorta.

While many of the moments of Truett’s CHD story are very clear to me, the next few hours were a bit of a blur. Words like “life threatening condition” were tossed around and my brain struggled to keep pace with what was happening. Truett went from being hooked up to a couple monitors while I held him and a small canula of oxygen to many more monitors and medications. I remember putting him on the warming bed in the NICU, not realizing that it would be the last time I actually held my baby for nearly five days.

I do remember looking at Joe as soon as we got the news about Truett’s coarctation and hearing Joe say, “If it was going to happen to anyone, it would be us. And we can handle this.” And while my first reaction was certainly fear when faced with my son’s diagnosis, I vividly remember feeling God’s gracious hand over the situation, and nearly instantly being brought to tears thinking of how gracious God was to offer us the gift of catching Truett’s condition when we did.

We waited some amount of time (time was a blur that day/night) for the cardiologist to arrive to talk through Truett’s case in more detail and make a plan for surgery. Sioux Falls didn’t have the capability to perform the surgery, so we knew we would need to be transported elsewhere to have the surgery performed.

When the cardiologist arrived, she explained that when babies are in the womb, they have something called a PDA which is a temporary structure that exists for babies in the womb. Since babies don’t use their lungs in the womb, there is no need for the heart to pump blood to the lungs, and the PDA allows the heart to bypass the lungs. When a baby is a few days old, the PDA closes/deteriorates and the aorta begins to function to bring blood to the kidneys, liver and lower extremities. A hormone called prostaglandin, which is provided by the mother in the womb keeps the PDA open. Because Truett’s coarctation and narrowing of the aortic arch so severe, when the PDA closed he began to deteriorate rapidly. Which is why he appeared to be so well initially and then declined so rapidly.

What was unusual in our situation was that Truett’s severe coarctation presented itself very late – at nine days old. When they started the prostaglandin to try and re-open the PDA, it had already started to deteriorate and the prostaglandin was only marginally successful at opening back up the PDA to maintain blood flow. When they realized that the prostaglandin wasn’t working as well as they hoped, it went from “we will likely transport you for surgery within the next day or two” to “we are going to get you out tonight.”

One huge grace in all of this was the fact that our early detection of Truett’s rapid breathing and the medical team’s quick action to catch the coarctation meant that his heart didn’t have to struggle to pump blood very long. We were so thankful that his heart showed no signs of damage because it was caught so early!

We were given a couple options of where to send Truett for surgery, but it was clear that our cardiologist thought most highly of the team at the University of Michigan in Ann Arbor. And so, hearing that, we made the decision to head to Ann Arbor.

Part 2 to come.