Week 3

Week 3 started off with some great friends (the Pillivants) on Sunday night who brought dinner and a bunch of moral support. Amidst 6 kids who couldn't watch any TV because of an internet outage, we were able to share some great kindness and support.  A few years ago, these friends suffered a devastating loss when their son died from SIDS at 2 months old, and they shared some of the challenges they faced. Regardless, it was yet another reminder of how faith and friendships can get you through just about anything, and how we are blessed with the army that God has provided along our journey.



Tuesday the 22nd was our first appointment with the therapist. We initially discussed how each of us were reacting to the situation, but turned the focus to preparing Jane, Edward and Andrew. She suggested that instead of a direct approach (which was our original plan), we use a more gradual introduction of concepts, starting with the understanding that new life is delicate and fragile - that's why the baby stays in mommy's womb. These early stages are a chance to form many parts of their body, and Caroline really needs our love and prayers. At the next stage, we'll introduce kids to the concept that not everything goes right all the time, and sometimes things can go wrong. Then, we'll introduce the concept that sometimes babies can go straight from mommy's tummy to heaven, and not spend very much time with us. Over the next few weeks, we'll gradually work our way up to the concept that something is wrong with Caroline, and she will not get to come home with us in the way we were all expecting and praying for.


Jessica had 2 more doctor's appointments this week with her regular OB and MFM.  Caroline's
kidneys grew approximately 1cm this week--which doesn't seem like much, but is significant.  Also, the amniotic fluid levels continue to decline, because of Caroline's low kidney function--the fluid is essentially a baby's "urine."  The doctors agreed that Jessica should have alternating weekly visits - her regular OB one week and MFM on the other.  This will give us a more regular schedule and will cut down on some doctor's visits.



Once again we find ourselves doing what every parent would - praying for a miracle, so that our child could live a full and wonderful life, or at least enough of a life to grow, to experience and use senses, to know love, and to understand. But we remain grounded in reality that Caroline might also have a different purpose. We might not understand that, but we'll learn in time. Already we've noticed that Caroline's life has changed our perspectives - we are more patient with our other three children and have a deeper appreciation for them, and we're refocused on some more important things in life (and not sweating some of that small stuff that comes our way). Caroline has already made us better parents, even if we can't yet give her a hug and a kiss to thank her.

The Second Week

As we started the second week, we prepared for Tuesday, Jan. 15th - another visit to St. Ann's MFM for an ultrasound, and a second attempt at an Amniocentesis.

We started off seeing some more pictures of Caroline again, this time with a new ultrasound technician, who captured her precious and wonderful heartbeat on a small "heart" recorder for us to save.

Then a different doctor (Dr. O'Shaughnessy)  came in to do the amnio. While they were able to get in, they were surprised when the fluid that came out had a dark red blood in it, as they were expecting it to be relatively clear. The trauma of the first amnio caused Jessica's blood to be mixed with the amniotic fluid.  Because of this, they switched up the order of testing, and drew some of Jessica's blood, so they could tell whether the amnio sample was Caroline's or Jessica's. Had Caroline been a boy, it would have been easy to tell - if there was a Y chromosome, it's not Jessica's DNA.  It will take 3-4 weeks from the amnio for the labs to tell whether they have a sample that can be used - a sample that is Caroline's cells and not Jessica's. From that point, then they can start the test for Meckel Gruber, which takes an additional 3-4 weeks.

We continued on to meet with Katie (the genetic counselor), to discuss the tests, including the possibilities of some other conditions. If they confirm that Caroline has Meckel-Gruber, then we'll test both of us to see if we are recessive carriers. Katie also provided a few books for us, and some children's books that were donated by some parents who had recently been in a similar situation, but we haven't decided when to use them yet.

The visit to St. Ann's MFM wrapped up with a consultation with Dr. O'Shaughnessy. We took an in-depth look at the ultrasound images from last week and this one, showing the size of Caroline's kidneys and abdomen (we later found out the kidneys are 14 times normal size) as well as seeing the images of the brain-matter that is not in its right place. Here, we could clearly see what they were seeing - an abdomen swollen and larger than the head, and something that wasn't right on the back of her head.

Tuesday night was an uplifting experience. Although Tom had a work meeting, Jessica was able to attend a mass at St Michael's that had been donated by Tom's Knights of Columbus Council. The attendance was overwhelming, and even a few of Jessica's non-Catholic friends came to support her and Caroline. Jessica's Mom, Anne, also drove down from Youngstown to be there, and stay for a day to help out around the house. We were surrounded by love in all directions.

We also initiated contact with the Prenatal hospice team (based out of Nationwide Children's Hospital) and we reached out to Back in His Arms, an organization that helps families with stillbirth and infant loss situations. We also spoke with the therapist that our friend had recommended and set an appointment for Tuesday the 22nd to begin conversations on how to process this information and also how to best tell the children.

The weekend approached with some heavy predictions for a snow storm, and we hunkered down with a warm fire in the fireplace, and some great bolognese sauce for dinner, all while praying for a miracle for our sweet baby girl.

The First Week of Knowing

Tuesday morning, we were back with Jessica's regular OB - Dr. Murnane. He provided some more answers to our questions regarding the planned diagnosis. While this was a difficult appointment, we really appreciated that his advice always had the highest respect for Caroline as our child, as he was well-grounded in protecting that life. In discussing the increased chance of stillbirth, we asked about getting a home fetal monitor to check the heartbeat, and Dr. Murnane even showed us some pointers on using it.

Dr. Murnane also let us know about "prenatal hospice," a program that was started by a doctor who recognized that families need support handling a pregnancy that's expected to have a special baby. It's run out of Nationwide Children's Hospital in Columbus, and a social worker is assigned to coordinate our "team," which includes Dr. Murnane, the high-risk OBs at MFM, and other people who will help us plan for a birth that will be different than most. He placed the referral, so we could get started.

On Thursday, we also met with our pastor, Father Dinovo of St. Michael's, to begin some understanding from the perspective of our faith. We learned a little about baptism in these circumstances, and also about the various forms of funeral rights for various circumstances, including one for those who never had the opportunity to be baptized. He shared in our pain and sorrow but most importantly prayed with us and over us with a special blessing.  We agreed to gather some more information, and then meet again in a month.

We also started thinking about how to tell Jane, Edward, and Andrew, but we knew that was something that needed some more thought. A friend (who is a counselor herself) gave us the name of a strong Catholic therapist who specializes in infant loss and miscarriage.

As the weekend came, we took a chance to catch our breath, say thanks for such a network of family and close friends, and thanks for our church community. We started the weekend with our church's family holy hour of adoration and benediction on Friday evening.

Throughout this entire process we have felt the presence of God-which has provided us both comfort and strength when we needed it the most.  In our hardest times we have not felt abandoned by Him but rather that our Lord is closer than ever- an amazing grace that has been given to us both.

The 18-week Ultrasound

January 7, 2019. In the afternoon, Jessica checked into St. Ann's Maternal Fetal Medicine for her 18 week ultrasound, where they check the key parts of the baby's anatomy. After much looking and scanning, and a long wait for the doctor, it was all a blur.

What the doctors saw: the back of Caroline's skull had not closed and a portion of the brain was outside - near the neck. They also saw that her kidneys were enlarged and had multiple cysts, and there was some fluid around the heart.

In a conference room, the MFM doctor answered some of our initial questions. The issues with the brain and kidneys are strong indicators of a rare genetic disorder known as Meckel-Gruber Syndrome.

That's where we heard the worst. Compared to a normal pregnancy, babies with Meckel-Gruber have an increased chance of stillbirth and those that are carried to term do not live long - might be minutes, maybe an hour or a day. It is always fatal. Unfortunately, there is not much information, in part because the condition is so rare, but also because many of the parents who hear this possible diagnosis do not choose to carry their baby until their natural time - a fact that is truly heartbreaking to us.

Combined with some conversations with Katie, the genetic counselor, we learned that Meckel-Gruber is genetic. Although the condition has been observed for over a century, it was only about 5-10 years ago that it was discovered as genetic, and therefore capable of being tested. It is a complicated test, and is not on the common panels of blood work.

The doctors at MFM told us that an amniocentesis can confirm Caroline has MG, and we were able to try that afternoon/evening. While it should have only taken a few moments, after 45 minutes, both doctors were unable to get the needle to pierce the amniotic sack - it would "tent" and push in like pushing your finger into a balloon.

Physically, Jessica felt pain as they tried so many times but were unable to succeed. Emotionally, we had a level of sadness neither of us have ever experienced before, as we started to comprehend the life our daughter would never have. However, Jessica experienced the presence of our Blessed Mother, and the peace that the Lord can bring when He's with people. In that moment, she didn't feel abandoned, which is a grace she doesn't fully understand. She was also thankful that Tom was able to be there to hold her hand.

We rescheduled to try another amniocentesis again the following week. At home that evening, that's when we started to share the news with some friends and family, and started a week very different than we had expected.

Hello Friends and Family

Hello Family and Friends,

We decided to make our first attempt at a blog here, to help share with everyone what's happening with our amazing child, Caroline Mary (and us, her parents) at each step of this journey. We apologize in advance that this may not be technologically savvy, but we hope to use it to share the specifics. Thanks for being a part of her life - even in the smallest way.

For us, the journey started back on September 22, 2018, when Jessica first knew that Caroline was with us. Secrets like that were meant to be shared, so later that day when we were at the Ohio State football game, Jessica told Tom that our new child was already attending their first Buckeye game. Tom was understandably excited, with a few fist pumps, and couldn't wait to get to know this new life that was already part of our family.


Being our fourth child, we thought we knew how this all worked. However, at the first appointment with Jessica's OB and the ultrasound tech were concerned about a large amount of fluid in our baby's tiny little head. We could see ourselves what looked like a problem, and afterwards, Google searches didn't have a calming effect.


We were lucky to get into the high-risk Maternal Fetal practice at Mount Carmel-St. Anne's Hospital in just a few days. There, everything looked a whole lot better than the week before, and looked fine to the doctors (and to us). They connected us with Katie, a genetic counselor, to run a panel on Jessica's bloodwork, which came back fine.

That bloodwork also told us an important detail about this baby - one that we hadn't found out with our other three kids. The baby was a girl!


By this point, we had already mobilized some prayer warriors as we headed for a key ultrasound right before Thanksgiving. We were approaching the end of the first trimester, and once again, the Hospital MFM team said everything seemed normal. Combined with the results of Jessica's bloodwork, they saw no need for another ultrasound until January - about the 18th week.

And that's when most of you started hearing about her - from the pink fireworks on Thanksgiving, to the phone calls and FaceTimes with some big smiles. We were ready with the name Caroline Mary.


Overall, everything else we were experiencing was just like our other three pregnancies - nothing else unusual. We felt were overjoyed and excited to welcome Caroline Mary into our family with her expected arrival--June 9, 2019.