Month: October 2016

Week 27 (Part 2) – Ultrasound and NICU Tour

Part 1 of our story of this week is posted under CompassionNet.

Friday morning was a full one, with a follow-up ultrasound and meeting with a few NICU team members. It’s been seven weeks since our last ultrasound, and this was our first opportunity to look at images after understanding the diagnosis, and to see if anything changed.

We met with a really nice OB doctor after the ultrasound who summarized Samuel’s current situation: he still has a neural tube defect (spina bifida), omphalocele (abdominal wall opening), a small heart defect, and other more minor issues. None of his symptoms have gotten better since the last scan, and the omphalocele got somewhat bigger as he’s grown, which may turn into a more significant issue as we near birth. He also is surrounded by somewhat more amniotic fluid than normal, which can cause issues if the quantity continues to grow throughout pregnancy.

In good news, Samuel’s size is roughly on track for his gestational age. Low birth weight isn’t good for Trisomy babies, and we’re happy he’s on pace for his age.

The ultrasound went a little long – we have a lot to talk about these days! – and we went right away to the hospital where we’ll deliver. We had a meeting set up with the NICU support team, which consisted of two medical doctors, a social worker, and one of our CompassionNet people we met on Tuesday.

The whole team was wonderful. They took time to ask what we understood of Samuel’s situation, answered all of our questions as best they could, and made every effort to paint a realistic picture of the different scenarios Samuel could encounter. They were honest and direct, but also supportive of anything we ultimately decide to do.

There were a few new and important items that came out of our NICU meeting. One was that Samuel’s omphalocele will likely prevent him from eating after his birth. Becuase his intestines likely protrude into it, they will probably be kinked in such a way as to make eating unsafe for him. This means he’ll be on IV fluids until the omphalocele is surgically resolved, if we choose to treat it.

We also learned about breathing support. Trisomy 18 children often have trouble breathing. If parents choose to not intervene, T18 babies will commonly reach a point where their brains “forget” to tell their lungs to breathe. This is called “apnea.” If apnea happens for long enough, the child will pass away.

We’ve known about this from our Trisomy research. The big question is: what, if anything, can we do about it? There are short-term options like bagging or introducing air through his nose. The long-term one is being on a ventilator. Because T18 kids can be pretty weak, it’s often difficult to wean them off a vent once they’re on one. It might mean Samuel would be on one for his whole life.

It’s possible, but rare, to send kids home on a ventilator. They make somewhat portable versions of ventilators, and they can train us on how to use one. The shocker came when they told us it would likely take a hospital stay of at least 2-3 months to fully train us to care for Samuel on a ventilator. It’s not trivial at all, and it would be a major undertaking to bring him home on one.

There’s also the difficulty of anesthesia during surgery. Samuel’s neural tube defect and omphalocele are both life-limiting conditions. If there’s any hope of him living more than a few weeks, both of these need to be addressed. He’d be under full anesthetic, and this is a challenging trial for any T18 newborn. They didn’t have stats for us, but there’s a chance he wouldn’t survive the surgery. In addition, he’d need to be on a ventilator during the surgery, and may have difficulty coming off the breathing support when he should.

In summary, Samuel has significant challenges stacked against him. Trisomy 18 on its own means an average life span measured in weeks. The additional complications of the neural tube defect, omphalocele, and hole in his heart further reduce his chances of living very long, and the interventions needed to correct these issues are risky all on their own.

At the end of our meeting, the social worker told us the same thing the CompassionNet people did on Tuesday, that she was impressed with how well we were handling all of this. She doesn’t see all our tears and inner turmoil, but I was thankful for her words.

Afterward, she took us on a tour of the maternity wing and NICU. We didn’t actually go into the labor and delivery floors, but talked about where everything happens and got a feel for the layout. There are some concerns that we’re due in January, which is the height of flu season. This could limit our visitors, including Daniel, which is a significant issue if our time with Samuel will be short. Please pray for a mild flu season this winter!

Our time in the NICU was the hardest for Joanna and me. The NICU is in the new Golisano Children’s Hospital, the same place Daniel was treated for his diabetes diagnosis just three months ago. Many of the emotions from that time hit me when we walked the halls and rode the same elevators as before. I appreciate that hospital a great deal, but I don’t want to go back there! I don’t want to grieve and process and wait and wonder all over again, this time in a situation much more serious than Daniel’s. They provide wonderful care at this hospital – I just really, really wish we didn’t need it.

Our visit to the hospital was helpful, but heavy. We left in the pouring rain, and we needed to get home to pick up Daniel in time for his nap. On the way out we stopped at Chipotle for lunch, because, hey, sometimes you need to treat yo’ self! It was a good decision – it felt nice to take care of ourselves with so much else going on right now.

Thank you for following along with our story. I’m sorry that it’s a difficult one to share in, but we’re so thankful for everyone who loves, prays for, and supports us in this time.

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! 🙂 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…” 🙂

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!