Week 27 (Part 1) -CompassionNet

This week was an important one in our journey with Samuel. On Tuesday we had a visit from CompassionNet, a charity that works with children on Excellus health insurance plans who have a life-limiting diagnosis. On Friday we had two other appointments, which I wrote about separately.

CompassionNet sent not one or two people to talk with us, but four women who spent 90 minutes in our living room talking through possible scenarios for Samuel’s life and ways they can support us through all of them. They provide support to families in these situations, including talking with our medical team on our behalf, helping to coordinate funeral arrangements, providing palliative and comfort care, and basically being awesome supports to us. They have doctors on staff who can visit in our home to explain medical procedures we need to decide about, and they have child life specialists who will work with Daniel to help him understand what’s happening with his baby brother.

All of their services are totally free, paid for not by insurance claims, but as a charity fully paid for by Excellus. They were impressively compassionate and listened to where we were at with processing things.

I was encouraged at the end of our meeting when one of their team said, “I’m really impressed how much you’ve both already processed through things. These are difficult topics to discuss, and I’m impressed with how far along in the process you are.”

It was special for me to hear her say that because I don’t feel especially awesome in where I’m at with these things. It’s incredibly hard, and quite consuming at times. I don’t know if or how we should intervene in Samuel’s conditions, and frankly don’t even know how to make those decisions.

But Joanna and I do talk regularly with each other. We’re surrounded by a lot of people who are really supportive and loving toward us, and we pray regularly for God to touch Samuel and us. We are very aware of the reality of Samuel’s situation, and we talk often about how we’re doing as we each sort through these difficult decisions.

I know that all of these issues and decisions matter a great deal. I’m very thankful that Joanna and I get to work through it all together, and that we’re not on our own. Sometimes I think about people who don’t have a prenatal diagnosis and find out at birth, or lose a pregnancy suddenly, and I’m thankful we have the gift of time to think and prepare and grieve along the way. This is an incredibly difficult season of life, but I’m thankful for the time we have before we need to make many decisions.

Part 2 of this week’s story is posted in the Ultrasound and NICU Tour.

SPA Appointment – Week 25

This week I had my first SPA appointment, though¬†not the kind you might think! ūüôā After my 20-week ultrasound¬†revealed Samuel’s Trisomy 18 I was transferred to a high-risk pregnancy group, Strong Perinatal Associates,¬†affectionately called by its acronym¬†SPA. Women literally call in and say, “I’d like to set up a SPA appointment…” ūüôā

On our way, I felt tense¬†for some reason. As Bob and I talked in the car ride, I realized I was nervous about two things: I didn’t know how the doctor would view¬†our choice to continue this pregnancy, if we would be misunderstood or unsupported. And knowing how I am at¬†doctor’s appointments, I always feel bad if we take too much of a¬†doctor’s limited time, and I knew Bob had a growing list of questions he’d prepared over the past five weeks. I really wanted to be able to leave with a sense of peace and our questions answered, but when I’m feeling rushed I don’t like to¬†ask all our questions. We arrived early and Bob spent a few minutes praying that I would feel peace, that our appointment would go well, that we’d feel respected and supported and leave with¬†our questions answered.

Within minutes I started to relax, from checking in and joking with the friendly receptionist to being whisked right back by the nurse without needing to sit in the waiting room.¬†Then we met with the most wonderful nurse practitioner I could have asked for! She didn’t even look at her computer or run through her standard questions until about 45 minutes in. She first wanted to hear how we are doing personally, and answer any and all questions we had for her. Within the first few minutes she asked if we’d chosen a name and immediately lit up saying, “I don’t know if you’re religious, but Samuel is my favorite name for a boy!” From then on she referred to Samuel by name. She was incredibly supportive of our decision to enjoy whatever time we have left with Samuel, and encouraged us to choose what we feel is best for our family and assured us we will be supported by their staff and the teams at the hospital in whatever decisions we make.

I have no idea how long they typically spend with patients, but we spent over two hours meeting with her, the doctor who originally delivered the news to us at my ultrasound, and the genetic counselor who will be coordinating our appointments with all the other groups (NICU team, neurosurgeon, palliative care, etc.). I knew it was probably an unusually¬†long appointment even for them, but they were so patient with us, genuinely caring to make sure all our questions were thoroughly answered as we move forward. I walked out of there so thankful that God had answered Bob’s prayer and provided exactly what my heart needed!

As we learn more about Trisomy 18, it seems the longer this pregnancy continues there will be many complicated decisions before us. We will probably¬†need to have three birth plans in place to cover the different scenarios: Samuel could be stillborn at any point right up until birth, he could be born prematurely, or he might make it full-term. If he is born alive and closer to full-term, we have many decisions to make about how much to intervene versus simply provide comfort care until he dies. Some Trisomy 18 babies only survive a few minutes or hours, some a matter of days or weeks. A small percentage survives longer. They told us the average life span is about 5 days. Knowing a baby’s life will likely be brief, many couples choose to just hold and love their baby in the time they have, and say goodbye peacefully rather than send them off to risky surgeries that might not¬†prolong their life or significantly increase the quality of it.

From the problems the ultrasounds have shown, unlike many Trisomy 18 babies, thankfully Samuel’s heart is not¬†an issue that would cause immediate problems after birth or require surgery. It seems the two major things for Samuel are 1) Potential feeding and breathing problems that most Trisomy 18 babies have¬†(and we won’t know the extent of those issues until after birth). 2) Spina bifida – there is a hole at the base of his spine that would require fairly immediate surgery. If left untreated, he would eventually contract an infection that would take his life.

Our appointment was a sobering reminder that¬†there are no “good” outcomes, just many hard decisions before us – decisions we don’t want to make for our child regarding life and death. We are asking for God’s wisdom, that He would lead us every step of the way and continue to give us peace. We don’t know the outcome, and no matter how much we plan or prepare, there’s so much that’s simply¬†beyond our control. I’m so thankful He already sees the future and knows the number of Samuel’s days. And He is with us, taking care of¬†our hearts in this process. If we look only at the predicted outcomes, it feels grim. But that’s not the whole story…

At church this morning, this line from a worship song stirred my heart: “Now death, where is your sting? The resurrected King has rendered you defeated!” Tears escaped down my cheeks as I pictured the day coming when I’ll hold my sweet Samuel and say goodbye. But at the same time, hope rushed into my soul knowing that¬†Jesus died and was resurrected to take away the sting of death.¬†Even though I will probably¬†need to say goodbye to Samuel soon and experience the pain of loss, I know that it will only be temporary. Someday our family will be reunited with him for eternity, and that gives me hope.

We are choosing to enjoy as much¬†time as we have, and we are grateful for each day Samuel is with us. Every kick and movement reminds me that, for the time being, he’s still safe and alive inside me. In the meantime, we are going to treasure every moment of his life, no matter how long it lasts!

Samuel’s Heart

We went to the pediatric cardiologist a little over a week ago. They’re the first of many specialists we’ll see regarding Samuel’s condition.

We were referred to the cardiologist because our original ultrasound showed problems with Samuel’s heart. Trisomy 18 kids often have significant and life-threatening heart conditions, so this meeting was an important one. Our appointment would involve a detailed ultrasound of his heart and a consultation with a cardiologist.

Joanna’s mom came along to watch Daniel, which was a blessing because the last couple appointments we brought him along to were pretty interrupted by his squirmy-ness. All the pediatric specialists at Strong have great toys in their waiting room, so Daniel was happy as a clam to have both toys and attention from Grandma.

Our ultrasound tech was new and still in training. She was a little slow taking images, but she didn’t poke and prod Joanna too much, so that seemed like a win. We weren’t in a rush; we wanted the best images she could get.

Eventually an experienced tech came in to check things over, and they took us to a different room to talk with the doctor. She started drawing on a diagram with two hearts sketched side-by-side. First she drew a normal, healthy heart; then, Samuel’s. To my untrained eye, they looked pretty much the same.

“I have good news: your baby’s heart doesn’t have any major problems. There’s a small hole in the wall between the right and left chambers, but many healthy babies have this condition, and it often closes on its own.”

I blinked a bit. I didn’t know what to do with such a positive report. From our reading about Trisomy 18 I’d expected the worst: an improperly-formed heart that couldn’t sustain his life outside the womb. This was far better news.

The doctor told us the small hole in Samuel’s heart will likely not need immediate attention after he’s born. This is a considerable relief for us because it removes one of the big questions we could have faced: do we need to perform heart surgery on our newborn? Intervention questions are even dicier because Trisomy 18 kids’ damaged genes often slow recovery, which is already not trivial for any newborn, regardless of health.

As far as we know, Samuel’s other health concerns are still there. But we’re thankful to have one of our potential difficult decisions taken off the table for now.

The Ultrasound

I’ve recently become acquainted with a children’s book about the loss of a baby sibling. It starts out: “On the day it happened, everyone woke up happy.” That describes the morning of our ultrasound pretty well. September 1st¬†was a normal day: Daniel was cute as always, Joanna took him to Grandma’s house, and I brought the car in for an oil change. It felt like any other day.

We went in for Joanna’s 20-week ultrasound, to determine the gender of our baby and do an anatomy check. We had already had an early ultrasound to determine his due date and had no reason to suspect anything out of the ordinary.

Our ultrasound technician was chatty and friendly; she reminded me of a former coworker. We had Daniel with us and he got pretty squirmy, so I took him into the hallway to explore. Playing with the water fountain was the highlight of our travels.

I missed the gender announcement (it’s a boy!) when we were wandering, so when I returned they recreated it and pretended it was the first time Joanna was hearing the news. It was nice of them to humor me.

The first inkling of a problem was when the tech was leaving the room: “The doctor will review the images and be in to talk with you soon. There are a few structures she’ll want to look at.”

I tried to not be nervous as we waited and convinced myself it was probably nothing. Daniel moved around quite a bit during his ultrasound, and it must just be something like that.

A few minutes later a nice woman walked in and introduced herself as the doctor on site that day. “We need to talk about your baby. There are a number of abnormalities in the images we took today.” She started to list them:¬†his facial structure is flattened, the brain is being pressed down, spine has a hole at its base, the heart isn‚Äôt formed correctly, intestines are protruding from his abdomen, hands are clubbed over on themselves. There were even more problems she shared later.

The doctor said these signs are often indicative of a chromosomal anomaly. She specifically suspected Trisomy 18, which is a tripling of the 18th chromosome. Further testing would be needed to confirm this diagnosis; an amniocentesis is the surest way to find out, but it carries a small (<1%) risk to the pregnancy.

Trisomy 18 creates a myriad of physical issues, as well as major developmental¬†problems. There’s a significantly increased risk of stillbirth, and if our little guy is born alive, chances are high he’ll only live for days or weeks.

Joanna and I were in shock. Our two-year-old Daniel just spent four days in the hospital last month after being diagnosed with type 1 diabetes. Now we were being told more bad news by yet another doctor.

We decided to do the amnio that day, so we could have a sure diagnosis as soon as possible. If you don’t know what an amniocentesis¬†is, I’ll spare you the details. A quick summary is: picture a 4″ needle being stuck into your pregnant wife’s abdomen, and the doctor drawing out a few teaspoons of amniotic fluid. Joanna was a trooper.

We left after making plans with the doctor for more followup and to await the test results. The following days were filled with many conversations, tears, and reading about this disorder I had never heard of. Life took on a bit of a tunnel-vision effect; I could think of little else, and many other areas of life seemed to lose their importance. Even Daniel’s diabetes diagnosis – such a recent and major life event – receded into the background of my cares and concerns.

Since then things have gotten a little better, although I can’t say this journey is awesome or anything. We’ve had some time to learn about Trisomy 18, and we’re starting to understand what the coming months might look like. Joanna hasn’t miscarried right away or anything, and we’re starting to settle into a new kind of “normal” life.

I wish this wasn’t our story, but it is. I feel close to Joanna, and we pray, cry, and talk together about really important things more than ever before.

We also feel extraordinarily loved by so many people in our lives. From cards arriving in the mail, to offers to watch Daniel, to friends wanting to listen and cry with us, it’s been incredibly reassuring. I knew people cared about us before; I feel it tangibly now.

Thank you for walking with us on this journey. We don’t know where it will take us, but we’re glad to share it with you.

Choosing Samuel’s Name

When I became pregnant with our first son Daniel, I remember the morning I took the home pregnancy test. I was excited¬†but¬†nervous, not wanting to take it too early and be disappointed if it was negative. So I prayed first and asked God to speak to me about this child (if I was pregnant!). I opened my Bible and read verses from the book of Daniel, and from that day on I had a feeling we would have a boy, and I was drawn to the name Daniel. We didn’t plan to announce his name until after he was born, and even though Bob liked the name all throughout my pregnancy, he waited to give his final stamp of approval until we were driving to the hospital just hours before Daniel was born.

Bob has a policy that he won’t even consider baby names until after we find out the baby’s gender. Choosing our child’s name is a significant¬†decision, and I think the engineer side of him doesn’t want to waste time or effort. He figures it’s much more efficient to wait until we can automatically rule out at least half the name options!

In my family, we typically don’t announce a new baby’s name until right after they are born. But after my 20-week ultrasound and the Trisomy 18 diagnosis, we felt compelled to choose and announce his name right away since we don’t know how long we’ll have him with us, and we want¬†people to be able to pray for our baby by name.

We have given our son the name Samuel David, meaning “God has heard” and “Beloved.”

Samuel: “God has heard”

The story of Samuel in 1 Samuel 1-2 resonates deeply with our hearts for this boy. Samuel was the one boy’s name I liked before finding out his gender (shh, don’t tell Bob I did a little preliminary baby name searching on my own!) After the ultrasound that revealed Samuel’s abnormalities, I was awake for hours in the middle of the night, weeping, praying, journaling, listening to worship songs¬†and crying out to God. During that time I opened my Bible to 1 Samuel and read the first couple chapters.

In the story, Hannah is barren and cries out to God for a son, and she promises to give him to the Lord for all the days of his life. Miraculously, God answers Hannah’s prayer and she conceives, and — even more amazingly to me as a mother — Hannah keeps her promise. After weaning her son, she brings him to the temple, and he grows up in the presence of the Lord. I can’t even imagine what her mother’s heart experienced as she counted down her time with Samuel during those early¬†months and years, bonding with her new son yet knowing he was not hers to keep. My eyes fell on several¬†verses that left me in tears:

“As soon as the child is weaned I will bring him, so that he may appear in the presence of the Lord and dwell there forever.” (1 Samuel 1:22 ESV)

“For this child I prayed, and the Lord has granted me my petition that I made to Him. Therefore, I have lent him to the Lord. As long as he lives, he is lent to the Lord. And he worshiped the Lord there.” (1 Samuel 1:27-28 ESV)

We are continually praying for our son’s health and life. We know God is fully able to do a miracle and heal him completely if He chooses. But whether He does or not, we have dedicated Samuel to God. We know he is a gift of God for us to hold and cherish for possibly just a short time, and whenever that time ends we will release him to the presence of God. Since we chose his name, I’ve been playing worship songs and singing as I pray over Samuel. If the time comes that we need¬†to send Samuel to grow up in the presence of God, I want him to feel right at home when he arrives!

David: ‚ÄúBeloved‚ÄĚ

We decided to pass on Bob’s middle name as a gift to our son from his father. We love that David in the Bible was a worshiper, and a man after God’s own heart. 1 Samuel 16:7 says about David, “…Do not look on his appearance or on the height of his stature… for the Lord does not see as man sees: man looks on the outward appearance, but the Lord looks at the heart.” The doctors can tell us all the problems the ultrasound shows, but we know those physical issues do not define our son.

With this pregnancy, I’ve felt more cautious and less bonded with this baby. I have several friends who’ve had miscarriages or stillbirths, and somehow that felt like a more real possibility this time. Once we got the Trisomy 18 diagnosis, I knew it would be easy to try to protect¬†my heart from caring too much, since chances are high that we will lose him. But I want to do the opposite, and even if I only have a few weeks left with Samuel or a few moments after he’s born, I asked God to give me a deep love for this baby. Bob and I¬†want to pour out our love on Samuel in whatever time we have with him. We see him as created by God and deeply loved, and we wanted his middle name to reflect that.

Ask and Keep on Asking

Unlike my pregnancy with Daniel,¬†I didn’t have any strong sense¬†about this child: no name ideas or special Bible verses, no strong sense of the baby’s gender — although I was mistakenly guessing it was a girl! I figured it was mostly because I have less quiet moments to even think about the baby. My life is a lot busier and noisier with a toddler around, and I joked that this baby was like a typical second child, already getting “lost in the shuffle!”

In contrast with my first pregnancy, I did not download a pregnancy app or spend hours reading about my pregnancy each week to track whether my baby was now the size of a lentil or kumquat. Most of the time I could hardly remember what week of pregnancy I was at! We hadn’t even gotten around to making any official public baby announcement, not because we were trying to keep it private, but mainly because our summer was so non-stop crazy with traveling overseas, Bob’s busiest season at work, and then landing in the hospital with Daniel and learning to manage his new Type 1 Diabetes diagnosis.

Two weeks before the 20-week ultrasound, I was driving home from grocery shopping and during those¬†quiet moments alone in the car, I asked God for His thoughts about this baby. I had these words from Matthew 7:7 come to mind (in the Amplified version): “Ask (and keep on asking)… seek (and keep on seeking)… knock (and keep on knocking)…” I had a sense that with this child we were going to need to learn about perseverance in prayer. Immediately after that, I felt wave of peace wash over me, and I sensed that God wants to give us peace in the midst of relentless prayer.

In light of the Trisomy 18 diagnosis, I am clinging to this verse and putting it into practice. I will keep asking and praying for this¬†little boy; I know God is able to intervene and heal him completely. If God gives you faith to believe for that, please, please pray with all your heart! But I also trust God’s goodness no matter the outcome. Whether He heals our son¬†or not, God is deepening my prayer life and probably many of yours as well. I know¬†my¬†faith and trust is growing as I draw close to Him.

Thank you for standing with our family in this season. We feel the¬†prayers and love of so many people surrounding us, and God’s grace sustaining us. We¬†are¬†so grateful to have¬†our family and friends, and even strangers standing with us. It means so much to know¬†we don’t have to walk this journey alone!