Verity's Village - An Update on Our New Nonprofit

Things are happening fast around here, and Mom (aka Beverly) is spinning lots of plates at once...meanwhile...Verity has it made in the shade!

If you haven't heard our BIG NEWS, we have started a nonprofit ministry! Born of a dream that began in our hearts in the midst of desperate times in the early months of Verity's life, Verity's Village has taken shape in this first phase as a way to offer hope, encouragement, education, and practical support to families who receive a life-limiting diagnosis (of any kind) for their babies.

Our dream is to CHANGE THE NARRATIVE surrounding genetic anomalies...

from heartache...

...to HOPE!

If you've been with us since the beginning of this journey, you know the heartache we experienced after receiving Verity's diagnosis. Even when we were privileged to bring her home from the NICU after 18 days, we lived in constant fear for her life--after all, she wasn't expected to make it to her first birthday. Chronic sleep deprivation plus the stresses of a military move and life as a homeschooling family with 9 children led to some pretty dark times, to be honest. 

And yet...through it all...God's enduring faithfulness shone in the darkness.

And now? Life isn't easy by any means, but it's full of joy and HOPE. (And by the way...that HOPE would be present even if the Lord had decided to take Verity to heaven. We don't have hope simply because she is alive but because her life is eternal, and we will all live in heaven with Jesus someday thanks to His wonderful, gracious gift of salvation.)

Save the Storks gave us a generous $10,000 grant to launch Verity's Village this past spring. Because of that, we have filed our articles of incorporation and are waiting for final IRS approval for our nonprofit status. 

Meanwhile, though, we have made some huge strides! 

• We run a private, online support group for those who have received a prenatal diagnosis, providing practical support, education, resources (such as those listed below), and care packages. 
• We've published a special pregnancy journal for moms whose babies have a life-limiting diagnosis. 
• We have also published a 30-day NICU journal.
• I'm in the final stages of editing the book I wish I could have read when I was pregnant with Verity, From Diagnosis to Delivery: What to Expect When the Unexpected Happens During Your Pregnancy. 
• We are spreading the word about the services we provide to families in these situations through any means possible! We have sent out approximately 85 care packages in 2021. 

I'm doing as much as I can over the summer because soon the homeschool year will be upon us! Verity's Village needs to grow, grow, GROW because we NEED to reach more people. The needs are great. This is a HARD journey, and many (probably most) families come to us heartbroken already and feeling alone, afraid, and hopeless. We are here to walk them through this difficult journey and help them with the hard decisions so they can find hope, peace, and purpose no matter what happens. 

Would you like to know more? Reach out! We'd love to hop on a Zoom or get together in person (if that's feasible) to tell you more about our mission and how we've already been able to support over 120 families. You can view our temporary web site also to learn more...Storks is helping us with this aspect of our ministry, and we are still working on our logo and brand guidelines. Once that's finalized, we can go forward with our very own web site.

Would you pray for us right now? If you'd like to be a prayer partner or even support us financially, please reach out. We'd love to chat with you!

A Special Pregnancy Journal

Recently I started a private support group for mamas who receive a prenatal diagnosis. In putting together resources for them, such as a place they can access medical research for themselves and their health care providers (who often don't have personal experience with the kinds of diagnoses the parents receive for their child), I realized there was absolutely nothing out there for those mamas in the way of a pregnancy journal. All the ones I found were happy, happy, joy, joy. Having been through a pregnancy fraught with anxiety and fear over whether we would meet my daughter alive or not, I decided it was time to create a special journal that would address the different aspects of this unique situation. While some aspects allow mamas to focus on the joy of a new life and the positive aspects, other sections help them work through difficult topics such as what in the world to do about a baby shower and how to formulate a birth plan.

The journal may be purchased here (where you can also get a sneak peek at the inside by clicking on the image) and would make a wonderful gift for anyone you know who is devastated to receive a prenatal diagnosis. I would love to get it in the hands of genetic counselors, palliative care teams, pregnancy resource centers, and other professionals who work with women who are carrying fragile babies. If this is you, or if you know of someone who ministers in this capacity, would you reach out? We would be happy to discuss options for bulk ordering to make this resource accessible to others! 

Contents include: 

• Journaling pages plus prompts to help you remember details
• Space to record your baby's diagnosis and unique needs
• Appointment trackers
• Ultrasound photo keeper
• Ideas for a baby shower
• "Letters to My Baby" section
• Birth Plan Brainstorming
• Hospital Checklist
• And much more.

Mary's Prenatal Diagnosis

Christmas 2016 was not the most joyous in my collection of yuletide memories. I was "great with child," but even more burdensome than my cumbersome belly was the weight of anxiety heavy on my heart and mind. We were two months away from our due date with Verity (FT18), and though I had learned much in the couple of months since our diagnosis, I felt I had absolutely no idea what to expect in the days and weeks ahead of us.

This year, we are grateful and blessed to be celebrating our 4th Christmas with Verity Irene. And while our everyday life now is characterized by an unexpected sense of "normalcy," I will never forget the uncertainty and angst that blanketed our holidays that year.

I'm sure Mary felt those emotions as well! She had a "prenatal diagnosis," if you will--it was revealed to her that she would carry a special child, too! Can you just imagine the uncertainty SHE felt?! Where and when would she deliver her baby? What would the outcome be of a pregnancy that from the outside looked to be illegitimate? How would she attend to the special needs of a child who would be like no other?

God's heavenly purposes are carried out in each and every individual, including the precious babies who have an "anomaly." It is true that some are called to heaven before even taking a breath on earth. And it is true that some get to experience life only for a short time. Our thoughts and prayers are with those families who are mourning and missing those babies. And we continue to pray for the ones who are still growing and for the mamas carrying them, waiting for the next chapter in their own lives to unfold.

From the Jacobson family to all of you--I wish you a merry Christmas. May you savor the quietness of the season and experience true rest...may you know the grace and peace that only comes from the real reason for the season.

P.S. If you or someone you know has received a prenatal diagnosis, I'd love to offer encouragement and support. 

From Diagnosis to Delivery - A Resource for Moms with a Prenatal Diagnosis

It's been just over 4 years, but I well remember that difficult season of life: getting a phone call from my doctor and learning the baby girl growing inside me had what was considered a life-threatening diagnosis (Edwards Syndrome, or Trisomy 18). The following days and weeks were a living nightmare. My husband and I prepared for our baby's burial, and I was pretty much a weepy, emotional mess. Thank GOD for online connections! After about a month or so of feeling overwhelmed by negative information, we were introduced to online resources that actually showed REAL families living with children who had the same diagnosis. My eyes were opened to the positive stories of hope, and I began to turn my heart toward the idea of a different outcome than I had been led to believe initially. 

Of course, this also meant I had a whole different set of questions to address! The learning curve was steep, but as I look back, I can see how incredibly far we have come. Now our Verity is almost 4 years old, and our family absolutely adores her. I just cannot imagine life without her! But I will confess I was terrified to be the mother of a special needs child, especially when I already felt overwhelmed being the mother of 8 other children. 

From the moment of our diagnosis to the beautiful experience of Verity's delivery, my pregnancy was an emotional roller coaster. And beyond delivery came more learning. I won't say it's an easy road, but I wouldn't have it any other way. And because of the JOY and HOPE we have as a family (which ultimately comes from Jesus), I am now in a place where I am able to offer a bit of wisdom and experience as a resource for moms who have a prenatal diagnosis and are drowning in a sea of emotions.

We have a new private support group for those moms! I also have a free guide, From Diagnosis to Delivery. Please help spread the word! This is a journey best traveled with loads of support!

Today's Appointment

Time flies when you see the OB weekly! It was a fairly quick visit, so I'll keep this post brief:

• I may have actually lost weight this week...but maybe that's because they took my potty sample before putting me on the scale, lol! Seriously, I have not even been tracking my weight this pregnancy. There are enough other things to be concerned about!
• My blood pressure continues to be stellar. 
• Verity's current favorite song: "Just Keep Swimming, Just Keep Swimming!" Clearly she is doing well.
• I'm 39 weeks, 3 days, dilated a whopping one centimeter with no other signs of imminent labor. 
• No one is at all concerned about discussing induction (unless I were to be in favor of that, which is a big fat negative). This makes me very happy.
• We scheduled another ultrasound for next Tuesday. Hooray!
• If the ultrasound shows that Verity is still tracking upward growth-wise, we will leave well enough alone. If for some reason it looks like she is not doing well, then of course we will discuss what needs to happen next.
• Typically the docs would begin encouraging inducing around 41 weeks, but they are fine with allowing us to get to 42 weeks (again, assuming Verity is doing well in utero). 

I'm pleased with knowing the doctors are on board with allowing us to do what we feel is best. I'm also fairly relieved that my body, despite having lots of contractions on a fairly regular basis, does not seem to be in a big hurry to deliver Verity, at least as far as is possible for us to determine. We have some loosely-held plans for this weekend (including my 3 teens attending a Christian youth rally and celebrating my daughter's 10th birthday with her friends), so it would be nice to get past the weekend! 

Kenna's actual birthday is February 27, but we ended up having our family celebration last night as a just-in-case. The girls planning to join us for her friend party know that things depend on what is happening with Verity, so we will see!

Verity's Birth Plan

Verity has a raging case of the hiccups tonight, and that plus a few fairly painful contractions served as a wake-up call awhile ago. I am sipping water and trying to decide whether things are going to settle down or pick up...and that has me contemplating the reality that regardless of whether this is IT or not, our baby girl WILL be making her entrance into this world in the very near future! For now, we rejoice in the fact that we have officially made it FULL TERM (39 weeks + 2 days now)!

I was thinking recently that I wanted to post Verity's birth plan on this blog. In all of our 8 children's live births, we have never before written out our thoughts and preferences for a birthing scenario, but this time, a thoughtful, much-prayed-over plan seemed necessary and appropriate. Aside from the text box at the beginning giving the names of our family, photographer, and pastor, the rest of the plan is outlined word for word below. If if can be of help to anyone else, you are welcome to share. I know I drew heavily from some sample birth plans of other Trisomy parents, and I also asked for and received good input from some friends in the nursing field (particularly NICU nurses).

*************

Prenatal Diagnosis: Full Trisomy 18, diagnosed via amniocentesis at 18 weeks

Prenatal Ultrasound Observations:

·         Clenched fists

·         Clubbed feet

·         Delayed physical growth

We believe Verity is a true gift from God: every moment we have had and will have with her is a blessing. Although we have a realistic view of Verity’s diagnosis, we have never stopped praying for her. Additionally, we have done our own research and made contact with other families in recent months. We have learned that FT18, contrary to being “incompatible with life,” is instead a condition that, while certainly dealing with special needs and challenges, does not preclude the child or her family from experiencing the joys of life…no matter how short or long that life may be.

We ask that our baby be referred to by her name, Verity, rather than “baby,” or “fetus,” etc.

We would like to find a comfortable balance between interventions to help her live longer and not creating any extra needed pain or discomfort for her. We would like any interventions to be based on vital signs and Verity’s specific needs, rather than her diagnosis of Trisomy 18.

It is important to us that no one enters the room during or after delivery without being fully aware of our situation and wishes – this includes family and medical staff.

NOTE: We reserve the right to alter this birth plan at any time during this process!

Labor & Delivery:

Pain Relief: no narcotics - epidural only as I wish to stay alert and aware

Vaginal Delivery: I have had 8 previous vaginal deliveries, and so this is the preferred method. However, we would like Verity monitored during labor, and if she shows continued signs of distress we would like a C-section delivery if it means the difference between delivering her alive instead of stillborn. I would like to tentatively plan on getting an epidural immediately after being admitted since we expect Verity to be small and labor may be short. I will do what is necessary to help stabilize her and deliver her alive. I wish to have my husband and photographer present in the room during labor and delivery, and depending on circumstances, my oldest two daughters (Charis and Kenna) may desire to be present—if there is no impending emergency, I fully plan to allow them this opportunity.

C-Section Delivery: If a C-section is needed due to fetal distress and could get Verity out alive, we would like to switch to this option. Please keep my pain management to epidural only as I would like to remain alert and aware. I would like my husband and photographer in the room.

At Birth:

·         We would like Verity immediately placed on my chest after birth.

• We are ok with immediate resuscitation if needed (CPR, oxygen etc…) If intubation is the only thing keeping Verity from living, and its effects will be treatable moving forward, meaning her heart is functioning well and nothing else is causing life-threatening concerns, please proceed with intubation.
• She is to have delayed cord clamping from the umbilical cord for at least two minutes after the placenta has been passed.
• We would like as much skin-to-skin time as possible.
• Any evaluations that need to be done immediately, we ask for as much as possible be done on my chest. Any routine care (suctioning, toweling off, oxygen, eye ointment, vitamin K etc…) can wait as long as possible so we can evaluate Verity’s condition and give her as much skin to skin time as possible.

·         We would like Verity to be evaluated to determine if there are any esophageal abnormalities before attempting feeds. (See also Potential Medical Care section.)

• If Verity is able to nurse, we will try to do so. (I have successfully nursed all 8 of our children but not without a variety of difficulties from time to time.) We understand that Verity may very well need help, whether through a feeding tube or other method than nursing, and we support interventions that will allow her to receive nourishment in the early hours and days after her arrival if she is unable to orally feed either through lack of suckling reflex or any esophageal abnormalities.

Post Delivery:

As parents we would like to follow Verity’s lead during all interventions to find a balance between helping her live longer and not putting pressure or pain on her body that she can’t withstand. We would like Verity’s life supported based on her vital signs and any of her specific defects, NOT based on the Trisomy diagnosis. We would like all possible resuscitation work on Verity to be done in the delivery room OR near the parents. If Verity has to be taken elsewhere for care, Ted will go with her, and I would like to be taken to her as soon as possible.       

We understand that after birth Verity may have more or fewer medical problems than originally anticipated. We ask that all treatment options be discussed with us as parents as you see issues arise. No students or unnecessary staff present, please. Please hold off on all non-life saving tests (weight, measurements, bath, footprints, etc.) until Verity is stabilized. Once stabilized, we would like Verity to receive an ultrasound of her heart and brain to confirm any prenatal defect specifics. We do not approve distress medications, such as morphine, unless further discussed. Verity must be accompanied by a parent at all times.

Potential Medical Care Summary:

                        __ delivery of oxygen through non-invasive measures (blow-by, nasal cannula)

                        __ delivery of oxygen through invasive measures (CPAP, Intubation)

                        __ administration of CPR (chest compressions, ambu bag)

                        __ administration of resuscitation medications (ex: epinephrine)

Feeding: We would like Verity to be fully evaluated to determine if there are any esophageal abnormalities before attempting feeds. Aspiration due to low muscle tone is a concern, and we want to protect her lungs.

            __ swallow evaluation

                        __ IV feedings

                        __ nasal gastric tube placed; feedings initiated

            Post Stabilized Tests:

                        __ head ultrasound to determine any specific defects/abnormalities

                        __ cardiac testing to rule out any missed cardiac abnormalities

                        __ sleep study to check for apnea

            For home care:

                        __ Massimo sat monitor for Verity’s pulse/o2 sats

If Verity is stillborn:

We would like to hold Verity as long as we need, waiting to take any measurements or do any routine procedures. We would like to bathe and dress her and have photographs taken. We would like the opportunity to make hand and footprints and/or molds.

At this point we do not have any information on what happens with Verity should we lose her in the hospital, and we would like to discuss these options with the appropriate party.

Finally, we understand and anticipate that this will be a difficult birth for everyone, including the medical staff providing our care. We greatly appreciate your service and understand we cannot do this without you. Thank you for your commitment to our AND our daughter’s care and well-being.

Valentine's Day Check-Up

Yesterday we went in for what may very well be Verity's final ultrasound! It's hard to believe we have made it past 38 weeks with this pregnancy. I really am starting to think it would be just like God to have Verity be our "latest" baby and come well past the 40-week mark! (So far that award goes to Tobin, who arrived only 2 days after his due date...most of our babies have been early!)

My mother-in-law, Rhonda, accompanied me to my appointments, and Ted joined us there from work. What a blessing to share the ultrasound time with her this time! My mom got to see Verity in November during our Thanksgiving week ultrasound, Charis has accompanied us a couple of times, and Ted has seen all but one in person.

Verity's heart rate was great, over 150bpm, and as usual she was wiggling all over the place. She is head down, and we got a great look at her little legs, knees and feet (but no pictures) that showed some meat on those little bones! Best of all was the news that she is weighing 5 pounds, 15 ounces, an astonishing amount of weight gain in 4 weeks...last time she was 4 pounds, 1 ounce! This puts her in the 8th percentile, up from the 4th where she was holding pretty steadily over the course of a few months. This also gives her an even better chance of faring well during and after birth. Her big sister Kenna, the earliest of our babies, arrived at 38 weeks and weighed 6 pounds, 5 ounces. It's entirely possible that Verity will outweigh Kenna depending on how much longer she "cooks!" Our doctor seems to think all is going well and reiterated that the nurses are all on alert and ready for our arrival when the time comes.

Over the next couple of days, I have a project in mind: sorting through Rhema's newborn clothes and setting the smallest ones aside for Verity. Confession: these outgrown clothes have remained in bags in our basement because I couldn't muster the strength or energy to go through them, uncertain of whether they would ever be worn by another one of our little ones. But now...today...I feel pretty darn sure that we'll be bringing our girl home from the hospital! It's time to NEST!

...But the Flesh Is Weak

Being 42 and pregnant is not necessarily a combination I would recommend. Two years ago I ran a marathon in Athens, Greece; two hours ago I managed to walk 4 blocks from my chiropractor's office back to our house...and felt proud to accomplish that much after this week of woe.

Usually my pregnancies are pretty "easy." Oh, sure, I've dealt with some small issues here and there (early pregnancy nausea, some heartburn, swelling) and of course the inevitable feeling-like-a-whale, grunting-when-rising, awkwardly-flopping-about phase that means Baby's due date is approaching (although not soon enough for my liking).

But this...? My 11th pregnancy, the 9th one to make it past the first trimester...this pregnancy takes the cake for physical difficulties. Let's be real: it was a number of pregnancies ago when I realized that being pregnant in my 30s was much harder than in my 20s! And in my 40s?! Good heavens! I thought the varicose veins and swelling I dealt with during Rhema's (Baby #8) pregnancy were pretty awful! Not surprisingly, the veins began bothering me again early on with Verity, and this time I took the time to get fitted for some quality compression stockings that have helped tremendously. In fact, one improvement is that I hardly ever have any swelling. Yahoo for that!

Unfortunately, the combination of my age plus the T18 diagnosis has me a bit on edge, so when I experience what is for me a new and unusual form of pain or discomfort, I'm never quite sure whether it's something I just have to endure or whether it warrants further examination. Christmas Eve had me questioning some more experienced folks when the stabbing pains in my right leg (the one with the lovely varicose veins) were sharp enough to reduce me to tears. Based on input from some nurse friends, we decided I should head to the emergency room (because of course these things happen on the weekends when the military clinic is closed) to get checked out, just in case deep vein thrombosis was the cause.

Knowing I was likely to be "occupied" for a number of hours, I chose to drive myself and have Ted stay home with the kids. I left the house around 11am, all my hopes and plans for a lovely, family-centered Christmas Eve crashing down as I took a small packed lunch, water bottles, and some reading material...Rick and Karen Santorum's account of having a little girl, Bella, with trisomy 18. Bella's Gift is a beautifully written and brutally honest love story.

I was glad for the book...I waited in the waiting room nearly an hour and a half, and then I was in the ER exam room for about 4 hours. I quickly learned that I needed to MOVE every 10 minutes or so; I couldn't stay sitting or lying very long without the stabbing pains bothering me. So I rotated between the bed (leg elevated) to pacing my room a bit to sitting awhile to pacing the room...and so on.

In between all of this I saw actual people from time to time, lol! Eventually I got blood drawn to determine whether it was "thicker" than normal to see if there was a concern for clotting. Apparently that was the case, because then the next step was meeting the Venous Doppler machine and the friendly tech who accompanied it. She did her job well, but I nearly passed out when she had to scan the painful parts on my lower leg! My blood pressure dropped and there was a bit of a stir, but before too long I was back to normal and hearing from the doctor that, PRAISE GOD, I did NOT have DVT but only superficial clotting (sometimes called phlebitis). I was released soon after that with instructions for home care plus a prescription for some pain killers...which was all but useless since it was Christmas Eve night by this point and nothing was open!

I made the drive back to our little town in time to join the family for the Christmas Eve sermon delivered by our pastor, having just missed the music portion during which our oldest daughter played the violin for the first time in a non-recital setting. Sigh. Thankfully her dad captured the songs on video, and she did fantastic!! So proud of my beautiful girl!

My leg pain forced a much simpler Christmas than I may have desired...even though we had already been planning for a simpler family celebration. My wonderful family pitched in to prepare various parts of the meal, and it was a memorable day even though (for me) a good portion was spent trying to prop my leg and keep moist heat on it.

After a few days, the pain from the clotting was greatly subsiding...but yesterday morning I awoke with a severe Charlie-horse spasm in my hamstring of all places. (Same leg as the varicose veins and clots--oh, joy!) The spasms were nearly non-stop allllllll day. The only relief I experienced happened during my two Epsom salt baths, one after lunch and one before bedtime. Today the spasms seem to have stopped--mostly--occurring only when I transition from sitting to standing or vice versa instead of continuously. The muscles all up the back of my right leg are extremely tender. My husband and I went to the chiropractor this morning, and I decided to try walking home slowly. I would not have been able to do that yesterday, so there is definitely improvement...but I feel like an old woman! Between the rotating use of heat packs and essential oils and pain relief cream, I am feeling far beyond these 42 years.

This pregnancy has been so hard on my body.

But it has also been extremely hard on my heart.

Some days it is difficult to say which is the worse for the wear...