Family Pictures!

A few posts back, we mentioned getting family pictures with Capri, the professional photographer who's one of Jessica's friends from college. They came back, and they're amazing! Here's a few of our favorites....

Confirmation

Tuesday, February 19th, was an uplifting day. It started late morning with a phone call from staff at Mount Carmel's MFM department - the results of the amniotic tests were back. The lab confirmed that Caroline's genes had two genetic markers for Meckel-Gruber, and thus confirmed the diagnosis. Although a fatal diagnosis, it is one that we have now been expecting. In an odd way, it was somewhat of a blessing, because we have what modern medicine calls an answer. As Jessica mentioned to the person making the call, this wasn't the worse answer she could have heard - if the test had been inconclusive, or they couldn't find anything, that would have been heartbreaking.

In the early afternoon, the mail brought a card and a gift that moved both of us to tears. Tom's cousin had made a rosary using a crucifix and central medal that had belonged to his deceased Aunt Carolyn. "Auntie Karen," as the family calls her, died when Tom was young, but he has distinct memories of visiting her when she was hospitalized. Just a year or two ago, Tom's Grandmother shared a binder of memories, including some of her artwork and notes. But what struck Tom most from that binder were the notes from the staff that cared for her - cared for someone who couldn't thank them. Regardless, the rosary has already taken a special place in our family's life.


Later in the afternoon, Jessica actually visited Mount Carmel's MFM for a regular visit and ultrasound. While the fluid levels seemed the same, and the kidneys had not enlarged much, we had a small victory - Caroline's bladder was visible! It meant that her kidneys had produced some fluid that would soon be added tot he amniotic sack. Despite the best efforts over all the other ultrasounds and the MRI, this was the first time anyone had ever seen it, nevertheless seen fluid in it.

Thursday morning, both of us returned to MFM for a meeting with Katie the genetic counselor. She had been on vacation (and thus wasn't the one to call Jessica on Tuesday), but this was our chance to ask questions and take the next step of having ourselves tested to confirm if one or both of us are recessive carriers. We should have the results in the next few weeks.

Caroline's MRI

Tuesday, February 12, 2019 was an important day getting to know Caroline and her conditions. Jessica started with an early afternoon check-in at Nationwide Children's Hospital in downtown Columbus, and headed to their MRI room. After the test Tom joined Jessica in the lobby for an ice cream sundae-- Jessica's reward for being cooped up in a tiny hole for over an hour!

This second part of the afternoon was our first in-person meeting with the prenatal hospice team. Consisting of a Social Worker, Dr Amy Schlegel (a neonatologist), Becky (nurse coordinator), and someone from the pastoral care team. The team started by asking us to talk about our experience to date and some of the other support people on this journey.

We discussed their experiences in these situations, and they shared their professional opinion that  honoring Caroline's life and legacy is one of the most valuable ways for us to successfully make it through such a challenging experience. They frequently see individuals and couples in denial, and briefly shared how damaging that can be. The team loved our therapist's approach to telling our children, and offered some additional suggestions and insights, including some additional children's  books.

Ultimately, we looked at the MRI images, which were some of the clearest pictures we have to date. Caroline was snug in her womb, head down, and sucking her thumb - happy as a clam. There were no signs that she was in pain or suffering.



Turning to the actual issues, her large kidneys, cysts and all, were readily visible on the first images. As they scrolled through, we could also see her eyes and other features. Dr. Schlegel also showed us the shape of her head and we discussed what that could look like after birth.

Among the toughest news was to share about her underdeveloped lungs, and the impacts the brain development may have. Dr. Schlegel noted that Caroline developed a brain stem, which is the part that rhythmically sends the messages to breathe. However, with lungs that small, we're not able to tell until she's born how much oxygen she'll be able to assimilate into her blood. She also lacks a normal amount of amniotic fluid (which we knew from previous ultrasounds) which is needed to "practice" breathing in the womb and develop the lungs.

Dr. Schlegel also talked about how pain mitigation in newborns is administered through the nasal passages - if Caroline shows signs of distress right after birth, needles are not necessary to provide her comfort and how any administering of medication will be our decision.  We had some tough conversations on how short that time in the room could be although of course these are all just estimates and in the end up to Caroline.  We also started discussing, our options and the basic understandings about what will happen during our time with Caroline. In the end we are in the drivers seat and will be reflecting more about how that will look in the coming weeks. 


 As our team grows, and our prayer warriors still fight the good fight, we continue to care for our Caroline in the best ways we know how.  For today we enjoyed pictures of our precious baby girl--who is just so loved!

Visit to Maria Stein

Sunday Morning, February 10th, Jessica left early to make a pilgrimage to Maria Stein and the Shrine of the Holy Relics (just under 2 hours away from our house), with Caroline's Godmother, Norah. In the late fall we asked our family friends (Norah and Pat) to be Caroline's Godparents. Being a great godmother, Norah had the idea for, and did all the planning, for what turned out to be quite the mother/daughter/godmother day trip.

The ladies started with a mass in a nearby church in Minster - St. Augustine, which was built over 150 years ago. During mass, Jessica had the feeling that God had been asking her to be there all along, although she had never been to the town of Minster.

After mass, Norah's cousin hosted lunch for the ladies in her home. While the original plan had been to continue on to the Shrine, some of Norah's plans came together at the last minute.  The ladies headed to Sacred Heart church for a private meeting with a Priest who has a special devotion to St. Philomena, a patron saint of infants and babies. Jessica learned some of St. Philomena's history, but they stayed with the priest for some very meaningful and holy time while the priest prayed with the ladies. He mentioned that she was a powerful saint, and suggested that Jessica continue to pray for her intercession.  (Prayer is below-please join us in this prayer to St  Philomena).

Throughout the trip, Jessica had an open heart to whatever the schedule (and the weather) provided, and although they sought to visit the Shrine of the Holy Relics, they did not arrive until almost 30 minutes after closing. Through some divine intervention, they not only achieved some after hours access, but some special prayers by a Sister of the Precious Blood. The Sisters oversee the Shrine, and while Jessica enjoying some peace with the relics, one of the Sisters came across Jessica. The staff member who provided Jessica and Norah access told the Sister, who was moved by Jessica's story. The Sister offered to pray with Jessica, and the ladies observed that the prayer was nearly the same words as used by the priest hours earlier. The Holy Spirit moves people in all locations, and makes its presence known in unique ways.

The ladies shared a slow and careful drive back through strong wintry-weather conditions, arriving quite late, but arriving safe nonetheless. All in all, it was a moving, grace-filled experience.

Tom's day started with Jessica's parents' help getting the kids to mass at our parish, St. Mike's. Deacon's homily focused on the call to discipleship, particularly in marriage. In another unique twist of fate, the priests celebrated Monday's Memorial of Our Lady of Lourdes by offering healing prayers after mass, making special call for those who sought prayers for the healing of others.

By Monday evening, we were preparing ourselves for tomorrow's important appointments - the MRI and consult with the prenatal hospice team.

The first full week of February

Sunday started off as a recovery day, but when there's 3 kids six and under, and a fourth in the womb, we have a better chance of winning the Mega Millions jackpot than sleeping in. We had a good family breakfast with some blueberry paleo pancakes, and some naps. However, as the day moved on, it was sad to see the snow melt and the mud take over.

Sunday evening we had the blessing of getting some time with Capri, one of Jessica's college friends who's a photographer. She's taken our pictures before (the Christmas card photo in the first post). We were thrilled to get some "bump" pictures - some that show our love among all our kids including Caroline. It brought some peace to know that we've memorialized her existence and that she's part of our family - in a more artful way than the ultrasound pictures.  (Pictures to come as soon as we get them!)

We also began a new routine - taking time each morning before the day starts to pray with Caroline.  This is bringing us closer to her (and each other) than ever.  This, along with the ultrasounds and Doppler, have become our special moments that we get to spend with our daughter.  It is not the traditional visit to the zoo or a park/playground, but so profoundly special in its own way.  We are getting to know her more and hopefully she is also getting to know us in her own way.

Tuesday we met with the therapist again. We talked more about the progress on telling the kids, and turned some discussion on how this can be a lot of stress on a family. We're truly blessed we have each other, and such a great network that supports us, even in these most challenging times. This experience is a life lesson on the benefits of each child, especially Caroline, getting to know and experience the love of their mother and father everyday.

Tom had a tough moment on his usual Wednesday morning phone call with his parents when the conversation turned to practical issues of a funeral for a baby that hasn't even been born yet.  It's hard to talk about funeral linens and a coffin, when Caroline deserves to wear all those hand-me-down clothes we have in the basement (thanks Mike and Anne) and to get spoiled in all the ways little girls do. Although it can be sad and frustrating, Tom is finding peace in knowing that God has some greater purpose for her.

Wednesday afternoon, Jessica had another visit to the St. Ann's MFM department. They saw that Caroline's fluid levels remained in the high 3s, and in that game, a tie is a win. Jessica also had some conversations about what to expect from the fetal MRI, which is scheduled for next week.

Even though Jessica was exhausted, she was able to put some words to how amazing and unique the staff at MFM has been. There's Lisa, the nurse who checks in with Jessica even when she's not assigned to Jessica's appointment. Jessica has shared some heartfelt stories with the ultrasound techs, who have been amazingly patient in explaining things and also have shared with her some of their struggles--one has a 5 month old baby named Lily who has required multiple surgeries with more to go (we are keeping each other in our prayers). When Jessica broke down during a consult with Katie (the genetic counselor), she didn't hesitate to provide a comforting hug. Other doctors (not even involved with her case) have passed along messages of prayers. And even Dr. Parker, the OB Jessica saw when she was pregnant with Jane, who's now on this staff in the maternity department, made a special effort to come down to maternal fetal medicine check on her. It's truly a special experience to see how compassionate people have been. God's love is present everywhere here--we can't imagine going through this anywhere else.


Thursday we met with Fr. Dinovo again. We updated him on what's been happening with Caroline. We discussed how he would be part of a team that will be meeting in a few weeks to coordinate Caroline's birth. We talked about baptism, not only some preliminary logistics, but also some faith-based aspects of it. And we opened some discussions on planning Caroline's funeral, and the local funeral homes. After the visit, we headed to the adoration chapel to pray together. Keeping our eyes focused on Jesus is what's getting us through this impossible time.

Several months ago, we had scheduled a Friday date night with several couples at Board and Brush. It was a welcomed night out to share something "normal" with friends that took our mind off our daily struggles that we've been experiencing.  And on Saturday, Jessica's parents arrived, to help with some basics around the house so we can focus on some "Caroline" things. While Anne heads back to work, Jessica's dad will stay with us for a bit to help out.

The End of January

As we continue to receive cards and hear about prayers, we grow in our faith, and in our love for Caroline. The support we've received is overwhelming, and we're truly blessed and thankful to all those who are working with and supporting us, even in small ways.

On Tuesday the 29th, we had our second appointment with the therapist, to discuss our progress on telling our other kids about Caroline. We're still discussing the concepts that parts come together, and sometimes they might not all develop correctly. Throughout the week, Jane and Edward had a few questions at random times to show that they're still thinking about it, and that was a good sign. 

In the middle of the week, Katie (the genetic counselor) called Jessica. The first phase of the genetic tests had come back, and the cultures are Caroline's!  A small victory. They're already off for the second set of tests, and we should know around the end of February if they have confirmed a diagnosis of Meckel-Gruber. There is a 25-50% chance that the test will be inconclusive, because they have not yet identified all the genes affected by Meckel-Gruber. Additionally, some genes where they would expect problems may be "clean" even though she still has the condition.

Wednesday and Thursday we experienced the deep chill of a polar vortex, with sub-zero temperatures and cancelled school. And late Thursday/early Friday, the snow came, for a third day of the school-kids getting a break.

On Friday, we also had another ultrasound and visit with Dr. Murnane. Caroline buried her face into the placenta, which is on top, so she was doing a good job of hiding and being shy. It was easy to see how large Caroline's kidneys were, and how they have pushed her heart up almost to her shoulders. We were hoping to get some better pictures of Caroline, but because the levels of amniotic fluid were so low, it was very difficult to see, and the 3D images were not clear at all.






The bottom of the normal range for fluid amounts is a 5. Last week there was just under 5, but this visit they estimated in the high 3s. Around this time (weeks 21-24) is when Caroline's lungs develop, and they grow by "breathing" the fluid. Since there is so little fluid, she won't have much practice, and it's therefore likely she will have a shorter time after she's born. It was tough news to hear, and all-in-all a sad appointment. That aside, Jessica is still healthy and safe.



Saturday Tom worked at a major annual Rotary charity event that he helps coordinate. Jessica was there for the food, and to share time with a friend, while the kids got to burn some energy off in a play area with bounce-houses and face painting. We were able to make it to a mass with Jessica's Irish ladies' group that evening. The boys were literally bouncing off the walls, and Jane certainly drew some smiles with the giant butterfly painted across her cheeks from forehead to chin.

Throughout the week, Tom started talking to Caroline more, and we've had some listening sessions with the at-home Doppler. It warms our heart to listen to hers, as we have a new understanding how precious each beat is - for her, and for all of us. Jessica is also starting to feel her move more frequently and Tom was able to feel Caroline kick for the first time that Sunday.