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!

How Little We Knew!

As we begin a new year and look forward to Verity's 2nd birthday in less than 2 months, I can't help feeling rather sentimental. Three years ago I had no idea what kind of a roller coaster journey lay ahead of us. Two years ago I was pensive and terrified in the final stretch of a precarious pregnancy. One year ago I was astonished and delighted that we were approaching that huge milestone, The First Birthday, which we heard only 5-10% of Trisomy 18 babies ever reached.

I thought my heart was full being the mother of 8 wonderful children. Now? Now it's absolutely overflowing! Getting to be Verity's mommy is icing on the cake of my personal journey in motherhood. I'm so thankful God prepared us to be her special family.

I remember the terrifying days following her confirmed diagnosis halfway through my pregnancy. We thought we would have to bury our baby shortly after her arrival. How little we knew how strong our baby would prove to be!

I remember the secret fears of not knowing how to take care of this different child, even wondering if I could possibly love her as much as my other children. How unexpected the journey of becoming an expert in Verity's care simply because we love her unconditionally!

I remember the dread and anxiety looking at the countless unknowns. The "what ifs" threatened to overtake me and carry me into a sea of depression and despair. How little I fathomed what joy this small but mighty bundle would bring to us all!

Verity Irene is plunging headlong toward her 2nd birthday (Feb. 28). She is not a scary statistic. She is a beautiful, joyful, playful little girl. She completes our family. She touches the hearts of strangers. She has made us all better people simply for being part of our lives. When I was pregnant with her, I read similar testimonies from other special needs families, some of whom have grown very dear to us over the past couple of years as we have gotten involved in online communities. I clung to those words, other people's stories of love and joy and hope. And slowly I began to dare to believe that maybe...just maybe...someday that would be OUR story, too.

And now--it is. It has been all along, really. Perhaps at times we were so busy trying to survive we didn't realize what was happening...the struggles and fears and difficulties only highlighted the beautiful tapestry woven with threads of love and joy and hope.

If you or someone you know has received a scary diagnosis for an unborn or recently born child...please know first of all that you are not alone--you're not alone with this specific diagnosis, and you're not alone in feeling all the strange, unfamiliar, even contradictory emotions that seem to be overtaking your soul. Have courage--dig beyond the statistics and find the families who will become your tribe, those who are already walking the path you've been unceremoniously dumped on.

Most of all, reach out to the One who created you AND your child. Know that He never makes mistakes. There is purpose far beyond what we can see and touch.

And it is GOOD.

Where's the Hope?

On Thursday I checked our mail for the first time in a few days and found a sweet package for Verity. I love the message from my friends at Hope for Trisomy*. These tangible gifts of love and support brightened my day. (Thank you, Erin!!!)

On Friday I learned that Karson, a sweet, beautiful, recently-turned-five-year-old girl with Trisomy 18, went to be with Jesus. I had gone to bed praying for her after seeing her mama's frantic post about a last-ditch effort to save Karson with ECMO. It didn't work.

Where's the hope in that?

This jolt to the Trisomy community reminded me of another recent bitter loss. On the 4th of July I saw photos of smiling Maddy radiating sunshine in her red-white-and-blue, and the next day she was gone. Just...gone.

Where's the hope in that?

My sweet friend Kirsten was forced to say goodbye to Heath, a special needs boy who left her womb early to join brother Gavin (who had Trisomy 18) in heaven.

Losing two special boys back to back. Where's the hope in that?

Fernando went to heaven on Good Friday, just before getting to celebrate his 4th birthday. He left behind loving parents and a proud big brother who wanted to tell his new class last week all about how special his brother in heaven is.

A grieving family left with only memories. Where's the hope in that?

As I sit reflecting on what is happening in our little Trisomy world, I ponder and pray for families who are facing chemo...getting tests done and waiting for answers...preparing for open heart surgery...caring for their little ones through sicknesses at home and in the hospital. (We ourselves are on the tail end of a fight with aspiration pneumonia that landed Verity in the hospital for a brief stay.)

In the midst of it all...in the midst of tests and sicknesses and therapies and surgeries...we hope.

Hope for Trisomy? Yes. Yes, there is.

Our own Trisomy journey has taught us that hope looks different at various points along the way. During pregnancy, I hoped I would meet Verity alive. Now, 18 months later, we have hope that someday Verity will sit up by herself, move herself around (whatever that looks like), and communicate with us (whatever that looks or sounds like).

We have hope that we will have many more experiences with our girl this side of heaven.

And yes...even though we don't really like to think about it...our hearts still hold onto the truth that ultimately, we DO have the hope of heaven awaiting us, an eternity in which Verity and her Trisomy brothers and sisters will laugh, sing, dance, and play without hindrance.

I can't pretend to know how it feels to lose my child. I only know how hard it hits me, every time it happens, even though in most cases I've never met the family in person. But the death of a Trisomy child affects everyone in the community. It's all too easy to put ourselves in the place of the grieving parent, because it's something we've all imagined happening, whether we admit it to others or not. But does the threat of death remove all hope in life?

What about this? Does the reality of a difficult life remove hope FOR life?

It's worth pondering. I remember the point during my pregnancy when I realized it was time to stop preparing for Verity to die and start preparing for her to LIVE. And I had to face the fact that her LIVING would look much different than any of our other children's lives.

Where's the hope in that?

Where's the hope?

I'll tell you. I see hope every day. I see it in the smile of a little girl who didn't smile for months. I see it in the giggles and grins she now gives her brothers and sisters. I see it all over her face when her daddy comes home and sings her special song. I see it in the twinkle in her eyes when she pushes against me wanting to be rocked. I see it in the kicking of her legs, the workings of her fingers, hands that used to be clenched so tightly. I see hope in motion as Verity rolls herself and works hard during therapy, doing things we never dreamed she could do a year ago.

I see hope in the form of a wheelchair that will grow with her. I see hope in the form of a committed family chipping in to make sure Verity has what she needs when she needs it. I see hope in the love and care her nurses have for her as they cheer her on each day and night they spend with her. I see hope in a medical community at large that is finally starting to understand the potential our kids have to grow and thrive with proper interventions.

I see hope everywhere Verity's life shines.

And it's a beautiful thing.

"...and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." --Romans 5:2b-5

*Hope for Trisomy's Addy Grace gift is inspired by the life of Addalyn Grace, who lived for 26 months with Trisomy 18. Sweet Addy was one of the "older" children I connected with through my newfound online community. Her mom, Erin, did a special post every day in March (Trisomy Awareness Month), which I looked forward to every day since at the time I was in the NICU with our newborn Verity. Erin's love for her only daughter was so evident...even more, her love for Jesus shone in every post. My heart broke when Addy unexpectedly went to heaven. Through the heartbreak, Erin and Jay continue to express the hope found only in Jesus Christ. They continue to be active in the Trisomy community and have touched far more lives than they will ever know.

New Resource for Trisomy Moms

March was Trisomy Awareness Month. I was pretty active in sharing things on Verity's Facebook page and a bit on Instagram (I'm fairly new to that world), but I completely neglected this blog! Some of us Trisomy moms were talking about what we wish we would have known, or what we would have told ourselves if we could speak from our present viewpoint to our distraught past selves when we first learned of our child's diagnosis.

From those discussions a blog was born. "More Than Ten Percent" seeks to share stories of surviving the first year as a Trisomy mama. The name comes from the fact that most of us were told at diagnosis that at the most, only 5-10% of these babies live to see their first birthdays. The truth is, when babies are given interventions, closer to 35% of Trisomy 13/18 babies reach that milestone.

If you'd like to see Verity's and my contribution to the blog, please check it out! And do read other stories as well. While there are similarities, each journey is so different. It just goes to show that doctors really have no way of knowing for sure what will happen. We pray that our stories can be a blessing and encouragement to parents who are struggling with a new and unexpected diagnosis.

Genetics Appointment

On Friday we drove to a Denver-area children's hospital to meet with a genetics counselor and doctor. I honestly wasn't sure what the purpose of this appointment was, but even though we didn't gain a huge amount of information, I still think it was beneficial.

First things first: Verity has gained weight! As you may remember, we switched to a 24/7 continuous feed when we saw that she had been losing weight with all her terrible vomiting issues. In exactly one month, Verity gained 13ish ounces, so she is now 13 pounds, 3.1 ounces. And she is now exactly 2 feet long!

One wonderful thing: we were given a hard copy of the Care Book, which is a resource from SOFT (Support Organization for Trisomy 18, 13, and Related Disorders). I had started reading the online copy, but to get all 70-some pages in a printout was wonderful and told me right off that this doctor is up-to-date with the research!

As an aside, we ONLY support SOFT as a resource for those with trisomy conditions. There is another organization out there that is much more negative. If you feel led to support an organization, please, please, PLEASE ask someone before throwing your money at what seems to be a worthy cause but maybe isn't really what it seems to be.

Back to the appointment: We answered lots of questions, reviewed Verity's history, and talked about possible resources for us within the Children's Hospital network, some of which may be helpful but others maybe not as much because we are already getting great care in our more local area. The one piece of info that I think can help us tremendously is knowing about a couple of other ways to know for sure what Verity's caloric needs are--we can't seem to get her total intake up to the volume that the dietitian and GI doc would like to see, and I can't help but wonder if she really doesn't NEED that much. Clearly she is gaining weight, and she looks so incredibly healthy! (Praise God for that!)

We don't need to have a return visit for another year. Dr. L said that mostly he would like to check in to make sure that we can have the most up-to-date research and information and discuss Verity in particular and see what she might need. It was very refreshing to have such a perspective from someone in this field, as I have heard awful stories from uninformed doctors who make outdated assumptions. We are grateful that the many caregivers in Verity's life are so supportive and either already knowledgeable or else very willing to receive new information.

Another Transition

On Monday we received some news that has made my heart sad all week. A few months ago we learned that we were eligible to receive nursing care, and the process, once begun, went very quickly. Before we knew it, we had settled into a new routine that included Margie, our full-time nurse. Any doubts or concerns I had about this transition melted away, and before long, Margie felt like part of our family. She has utterly fallen in love with Verity and cares for her so tenderly.

And so it broke my heart when she told us on Monday that she had regretfully given her two-weeks' notice to the nursing agency. A work-from-home job that she had applied for before she even met us has come through for her, and in her words, "at her age" she feels this is a better work scenario for her for the long-term. I can tell she is heartsick about it, which only makes me feel even sadder. It's amazing how three short months could so completely change us all. Though I haven't really ever been able to nap as we half-joked about, it has been such a blessing to have consistent care for Verity, allowing me to focus more on homeschooling and mothering my other children. Having Margie attend various doctor's appointments and keep up with Verity's therapeutic exercises at home has been an extra bonus.

The nursing agency is setting up a meeting for us in a few days with a temporary nurse who is only available for 2 weeks but who can hopefully help fill in the gap while they find a more permanent nurse who will be a good fit. I'm almost sick about it--there are so many little things Margie just KNOWS and takes care of...the thought of "training" one person only to lose her and then "train" another person is exhausting and overwhelming. Meanwhile, I have heard horror stories from other Trisomy mamas of their nursing experiences, and I am still amazed that we had such "good luck" with our first experience! I know it was God's hand of direction, but still...other families are praying, too! Why we should have such a fabulous nurse our first time around and others are having difficulties is a mystery...and though I'm not superstitious, there is a sense of dread that THIS TIME things won't turn out as well. I need to keep praying and trusting, I know. God knew about this transition long before we did; He brought us Margie, and He can bring us another wonderful person whom we can love and who will love our Verity.

The First of Many Appointments

Monday morning we took Verity in to see our pediatrician at the military health clinic. I LOVE Dr. T, who has seen most of our kids during our time at this assignment. He is so compassionate and practical! I had taken Rhema to see him for her 15-month well-child appointment soon after we got Verity's diagnosis last fall, and I ended up in tears in the exam room asking Dr. T what kind of support they could give us if we were able to bring Verity home. His response at the time was so encouraging and reassuring! We had touched base with him last week via the NICU staff, plus Ted had met with him in person during his TriCare runnings around on base, so Dr. T was well aware of how things were going with Verity after her birth.

Our appointment was so incredibly positive. Verity had gained weight and was tipping the scales at 6 pounds, 1 ounce (up from 5 pounds, 12 ounces the night before we were discharged). Dr. T was practically bouncing up and down, he was so excited to see how well Verity was doing! He literally could not keep from grinning as he said, "I usually try not to be overly positive in times like this, but when I look at her and all her stats and how well she's doing--it's really hard for me NOT to be super positive about her!" Oh, happy day! He answered the questions we had, talked us through our assignment transition process, and noted the case worker would meet us next week. He also wanted to schedule us to come in next Monday so he can have an opportunity not only to check up on Verity but also see how we as parents will then be coping with everything after having some time to settle in at home. He noted that we will have plenty of appointments to keep us busy and didn't want to add to our stress, so he won't make us come in randomly--however, we can say the word and come in anytime we feel we need to. And of course he wants us to do the normally scheduled well-baby appointments.

I'm starting a list of questions to ask him at next Monday's appointment, to include whether we can try continuous feeding at night to allow us parents a wee bit more rest. I'd also like to know exactly what evaluations she will be receiving in the coming months. Here's what I do know...all these appointments were scheduled on our behalf before we even left the hospital:

29 March = consultation with orthopedics
19 April = echocardiogram, immediately followed by a consultation with cardiologists
23 May = audiology testing with possible additional follow-up immediately after initial testing if further tests/info needed
19 June = comprehensive medical evaluations (4 hours) with a host of specialists

It's that last appointment for which I'd love a breakdown; what exactly will this entail? Other Trisomy parents highly recommend a sleep study to check for apnea and a swallow study before bottle or breastfeeding. I'd like to know if those are scheduled for that day and if not, see if we can get something scheduled before we move in July. Verity will be nearly 3 months old by the time we have this comprehensive appointment; I have no idea if she will be able and willing to nurse prior to that time or not, but I intend to keep trying!

Meanwhile...we are just plugging away at home, trying to figure out how to not only keep Verity fed and happy but also the army of other people God has put in our lives! We are grateful to have both grandmas with us for a short overlapping time. Ted's mom will head back home in about a week and a half. Hard to believe she will have been with us about 2 months!! It has been such a blessing to have her here, and we will miss her AND the wonderful help she has provided. My mom is able to stay somewhat indefinitely, and I'm thankful that we will have her and her years of nursing experience to help guide us as we navigate our new normal.

The "H" Word

Days 10 and 11
Aside from meeting with the cardiologists yesterday morning, the big news was that we heard the "H" word--HOME. Dr. A had a plan for getting us HOME early next week! I am combining these two days' updates because much of today's activity came out of discussions we had yesterday.

So, the doctor's goals and ours are the same: to get us home soon, but more importantly, to get us home safely. I so appreciate how clearly everyone is rooting for Verity to thrive and are working with her best interests in mind. This is all too often NOT the case for Trisomy families, and sadly many of them don't know differently and follow recommendations based on inaccurate information. Dr. A's two biggest things were making sure Verity could breathe well on her own (check!) plus making sure we had a plan of action for keeping her fed and growing.

As for that first item, we have been thrilled overall with Verity's numbers. While there have been alarms ringing with elevated heart rate and lower oxygen sats from time to time, they are not concerning and easily explained: she's mad, she's having a small bit of reflux, the monitors got kicked off, etc. The cardiologists as well as the NICU doctor cannot detect any heart murmur, and what we've seen over the past week and a half or so is a good indication of Verity's "normal," and nothing about it is concerning. There are no signs of apnea, for example, a very common Trisomy 18 problem. So while I have tended to worry over any change in status quo, talking with various doctors over the last couple of days has given me a lot more freedom to just RELAX. Verity is doing great!

As for the second going-home-milestone, we were optimistic in thinking that a 30-day feeding tube placement would get us home early next week, probably Tuesday, and we'd be able to work on nursing at our leisure while making sure Verity gets the nutrition she needs to grow. So, today revolved around feeding tube efforts. The nurses placed it early this morning; an X-ray was taken close to lunch time to make sure the end of it was in the appropriate place (it wasn't and needed to be drawn back 2cm); and a doctor arrived close to dinner time to put the bridle on. The bridle would have essentially tied it off underneath her nose, securing it so that it wouldn't be able to be yanked out. Unfortunately, though they were using the smallest/thinnest option available, Verity's nose is still too small for this to work for us.

This is a disappointing setback to be sure. However, in the scheme of things, it is a setback that we can deal with, even if we don't like our alternatives. A G-button is not really a good option at this point; it must be inserted via surgery, and they prefer not to do surgery on one as small as Verity. It may very well be ideal in the future, but now is not the right time. The only other alternative seems to be that Ted and I will have to learn how to place the tubes that she has been using here in the NICU. While I'm less than thrilled about this (I nearly passed out watching the nurse insert it last week and left to go shower when they were putting in the larger one today), I know that we will do what needs to be done, and after awhile it won't seem like a big deal. But the hassle, not to mention the risk of it being pulled out (by Verity or a curious sibling), just makes me heave a sigh...these are the things no one signs up for...you just do what you have to do. Anyway...all of this could mean that we don't actually get to go home on Tuesday; we just kind of have to wait and see.

In happier news, and going along with the feeding report, a speech therapist came in this morning and sat with me during a nursing attempt. Thankfully it was a fairly good attempt! Verity latched and sucked and swallowed multiple times. This all takes a lot of effort for her still, and we are nowhere close to being able to count on nursing as a major means of acquiring calories, but the structure of her mouth plus all the cues she is giving us indicate that she is fully capable of nursing someday, and so this is what we plan to work toward.

And along those lines, I've learned so much from the lactation consultants here! Once again, I'm amazed at how much of a continual learning process this is...my nursing resume continues to grow, lol. We decided today that my supply, while adequate for Verity's needs right now, really isn't where I'd like it to be, and so I have some new tips and tricks to try for gradually increasing it.

We've increased Verity's feeds to 50ml (given over 30 minutes) every 3 hours. They continue to fortify with extra calories, but she's getting breastmilk every time instead of a mix of my milk plus formula. So hooray for that! Though her weight last night had dipped JUST a bit, tonight she was up to 5 pounds, 5.3 ounces, her heaviest weight yet.

We also had a visit from a physical therapist today to initiate conversations about various therapies that will help Verity; we should receive a visit from an occupational therapist soon, but I don't know if it will be tomorrow or after the weekend. Our state of residence has a program called Early Intervention that will allow us to receive home visits from therapists in the area, and once we are in that system, they can hand us off to our next location so we can continue with forward progress. (No word yet on whether I'll be provided with a personal massage therapist, which I desperately need after sleeping under stress on a hospital bed for 11 nights...! Bummer that I had to cancel a scheduled massage appointment because Verity arrived the day before, lol.)

In other NICU news, our doctor received an award from the university (well-deserved, I'm sure! I love her!), and a film crew was here today to follow her around and work on a video. Dr. A asked me if I would be willing for Verity to be one of the patients she would see while on camera, and I told her we would be honored! I got a little emotional when she asked (hormones!) and told her that we had prayed that God would put together just the right team to care for Verity after she arrived, and we were so thankful that God had allowed Dr. A to have her two weeks of rounds at the same time we arrived in the NICU. So, Verity and I had cameo roles in this video! I had to sign a release form and everything, lol. The film crew had no idea about Verity's diagnosis, so I had the opportunity to share a little bit with them and give each of them a Verity card to keep.

Knowledge Is Power: Trisomy Resources

In the Trisomy parents' Facebook group I've been involved with since our diagnosis with Verity, I frequently see posts from new members who are either awaiting test results or who have just received confirmation of a rare diagnosis. Oh, how I identify with the precious mom or dad's feelings of being confused and overwhelmed! I know my first couple of posts filled with questions probably sounded very similar. How grateful I was for the members who swiftly responded, answering questions as best as they could and sharing pictures and stories of their children.

Recently my heart was so moved by one of these "newbie" posts, and as I left my own comment, I couldn't help but feel grateful at how far we have come in the 5 months since learning what exactly Edwards Syndrome/Trisomy 18 is. I gave advice that I wish I had known in the beginning: while waiting for test results, resist the urge to GOOGLE!! Instead, if one simply MUST research, direct those efforts toward searching out those who actually live and work with Trisomy babies/children. For those parents with a diagnosis, there are Facebook groups available that are much more current and interactive than, for example, this Trisomy 18 support group I found initially. This forum is not a bad resource by any means, but it did not contain the wealth of contacts and ease of accessibility as the private FB group that I later found through a new friend's help. (I do still visit it from time to time; new posts are few and far between, but I've been able to encourage some folks by dropping in now and then and sharing a bit of our experience).

Many of the parents whom I've met through this journey have their own Facebook pages available for the public to follow. Quite a few of these precious little ones have their own fan clubs cheering them on and praying for them each time they hit a new obstacle. It's really a wonderful thing to share stories and help educate others about this particular special needs community. Here are some examples of pages (shared with permission because they are open to educating others):

Team Benjamin: A Celebration of Life with EA & Trisomy 18
Adventures with Annalea
Remembering Noelle Faith
Diary of an Almost Father
Danny's Miraculous Trisomy 18 Adventure
For the Love of Lillian: A Trisomy 18 Adventure
Addilyn's Odyssey, a Trisomy 18 Journey
Jonah's Journey with Trisomy 18
Adventures with Addalyn and Trisomy 18 (This one is private but Mom says she approves "non-crazy" people, lol!)
The Joy Gabriel Brings
Celebrating Nate

There are many, many more, and I'm sure a search on Facebook could easily lead you to others. (Also, if you "like" one of these public pages, FB will helpfully recommend similar pages for you.) My point here is to help educate and equip people to turn around and educate others who find themselves on a journey similar to ours. When a parent receives word of an "abnormal" diagnosis, fear is crippling. Even the RISK of a positive test result incites fear and uncertainty. But knowledge is power. At the same time, there is a lot of JUNK out there on the internet (and I'm not even talking about politics, lol), and if people find what they think are "answers" in places that really don't have current information, they can make poor decisions that they may very well regret the rest of their lives.

So, if you find yourself listening to a friend sobbing on the telephone or answering a slew of emotional texts from someone who has gotten That Dreaded Phone Call from The Doctor, my advice is to listen, pray with your friend, and then give hope and encouragement. No matter what the diagnosis, there IS support. There IS accurate information...as well as inaccurate. Help your friend find the resources needed to navigate the journey ahead with full awareness.

More specific resources for families expecting Trisomy babies:

Hope for Trisomy web site
Trisomy Angels Memorial Website
Support Organization for Trisomy 18, 13 and Related Disorders
TRIS (Tracking Rare Incidence Syndomes)
ITA (International Trisomy Alliance)

Celebrating LIFE

A few weeks back our small group leader approached me to discuss the fact that some ladies in our church were wanting to put together a baby shower to honor Verity's life and to be a blessing to our family. I was so incredibly touched, especially when she asked for my input and acknowledged that no one was quite sure how to go about doing this given our situation.

Mamas in my FB Trisomy community gave some valuable input, which I passed on to Connie, and the ladies did an amazing job of putting together what truly was a celebration full of joy and meaning. Our church family showered us with love and blessings last night, and we are humbled, encouraged, and thankful.

The event was open to husbands as well as wives...I believe this was our first couple's shower, now that I think about it! It was so nice that Ted's mom is also here with us and was able to be a part of the evening. We left our kids at home in the capable care of their teen siblings along with another larger family who joined forces with them for what was, I'm sure, a rowdy and delightful evening for the kids as well, lol.

The potluck dinner was wonderful with plenty of good fellowship and fun shower games to keep us engaged. As I looked around the room at the nearly 3 dozen people who had gathered with us in person, I was overwhelmed not only at who was there attending our celebration in person, but also at the many who have expressed their love and support and were not able to be physically present, whether from our own small church community or from vast distances.

Our pastor shared some thoughts from Psalm 139, a beautiful and profound message. He has given me permission to share publicly, which I will do in a separate post at another time. Then we closed the evening singing "10,000 Reasons," "Blessed Be the Name," and "Great Is Thy Faithfulness." It was a beautiful and precious time with our brothers and sisters in Christ.

At home, Ted and I had some quiet moments reading the beautiful messages folks had written for us. The gift card and money tree is a blessing that will keep on giving as we reserve the resources and wait to see what Verity will need. And our freezer already has a stash of meals that will be easy to prepare when things start happening and Mom isn't home to oversee the menu plan.

I confess I was uncertain going into the event whether I would end up being emotional, but honestly, it was truly such a celebration with so many dear friends that there was no sadness at all, only joy and thankfulness in shared acknowledgement of precious truths...

"Whatever may pass and whatever lies before me...let me be singing when the evening comes...
Bless the Lord, oh my soul, oh my soul,
Worship His holy name;
Sing like never before, oh my soul, worship His holy name."

"Blessed be your name when the sun's shining down on me, when the world's all as it should be,
Blessed be your name.
Blessed be your name on the road marked with suffering, though there's pain in the offering,
Blessed be your name.
Every blessing you pour out I'll turn back to praise;
When the darkness closes in, Lord, still I will say: 'Blessed be the name of the Lord...'"

"Pardon for sin and a peace that endureth; Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow...blessings all mine, with ten thousand beside.
Great is Thy faithfulness, great is Thy faithfulness, morning by morning new mercies I see.
All I have needed Thy hand hath provided; great is Thy faithfulness, Lord, unto me."

Oh, yes! One other thing I think is worthy of reporting...Ted, his mom, and I were all approached at various times and told in no uncertain terms that I was NOT to write thank-you notes, that we had enough going on in our lives and no one wanted me to have additional stress! So sweet! But my mama raised me right, so I WILL write a note for Connie to put in the church bulletin...that was deemed acceptable, lol. I love the hearts of these men and women who didn't even want their names on the money tree envelopes.

When Caregivers Don't

Can we talk for a moment about how "pro-choice" often means its supporters are only "pro" the "choice" IF it's the choice to murder the child? For those of us carrying special needs children, the CHOICE to give that child life, even if that life doesn't "look" the way others think it should look, frequently is not a choice that is respected. In fact, it is fought against. Doctors often argue against carrying these babies to term. They resist parents' desires to be treated normally throughout the pregnancy and after delivery. They urge termination, and, failing to convince, wash their hands and instead refuse life-giving care measures, no matter how relatively insignificant.

If you don't believe me, take a look at some of these comments from parents on the Rare Trisomy Parents page on Facebook...

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We had known about these things [heart defects] for a few months. We delivered [Jan. 12, 2017] and they told us the next morning she also has T18. The doctors at [hospital name] denied us surgery and told us she would die. 

We are in Ohio and our hospital refused to do the repair for my daughter’s heart; she had a very large vsd, moderate ASD and a PDA. They were all repaired at [a different hospital].

My general OB scheduled my termination when he got the results of my amniocentesis before the news was transferred to me. Told me my daughter would end up being institutionalized if I kept her. Needless to say I switched practices and delivered her at 38 weeks. Evelyn Grace is full of Grace and thriving!

Doctors said some crazy things like "it won't be worth it to fix her heart because it won't change the outcome for her. She's going to die from something else." And a surgeon declined to perform her tracheotomy because he couldn't deal with the "ethical considerations of performing this type of invasive surgery on someone who can feel pain but will never be capable of emotional connection." She just turned 2.

FT 18…she's 4 months old. I was told to abort her numerous times and said she would never survive! I had to be induced at 42 weeks pregnant! I was told she would be a vegetable if she would survive. Lucy has congenital heart defects but with full intervention she is bringing her sunlight into this world and doing wonderfully.

When Penny was tentatively diagnosed via ultrasound, I was given the number of days I had to terminate before we'd even had the screening back to confirm.

I was told my Jett [Trisomy 8] would pass away in the womb or never make it through delivery. I was told he'd have an immense amount of deformities. I was encouraged to get a late term abortion when I was diagnosed with preeclampsia. My son lived seven beautiful days and his only "deformity" was a missing fingernail on his left pinky. He touched SO many lives in his short life. I would do it all over again. 

The only option [initially] given to us was to terminate our baby. We had our obstetrician appointment today….he said that I am likely to miscarry him anyway….he said he wouldn't think that any pediatrician would treat our son because of the T18. I just feel like everywhere I turn I'm confronted by the attitude that he is sub human & not worth fighting for. I have had the comments by loved ones of maybe that's why it's better to terminate so the baby doesn't suffer (not a valid argument & not mine or my husbands choice anyway) & "I don't want to hold a dead baby" when talking about family involvement when he's born.

This diagnosis is very difficult. We found out at 12 weeks and termination was pushed during the next 5 appointments. It wasn't until I was 5 months pregnant that actual support was offered to me.

My youngest is Jonas with a kind of PT18. We had big fights for him since doctors denied him treatment for a long time, and he had pain because doctors didn’t believe in him. Now he is 3.5 years old, and doctors have admitted they were totally wrong.

After the blood test, another ultra sound and an amino, it has been confirmed that my little girl is positive for T18. The genetic department, specialist and my OBGYN are all without any hope or support. I began researching online only to find that babies born with this are not automatically doomed. I have looked in my area for support and information only to come up empty. I am a single mother of four other children as well. I currently have only the state insurance and fear this will impact any medical help my daughter could otherwise have.

 I wasn’t given much hope either during my pregnancy. In fact my OB said it was better not to get my hopes up.

We were not given any hope; everything the dr told us was very negative. We left the hospital with hospice care after being in NICU for 2 weeks. Our daughter will be 4 yrs old in less than 20 days. She has continually proven everyone wrong and surprises us every day.

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The above comments are from families of living Trisomy children (mostly T18) and don't even reflect the countless stories of children who were given dire diagnoses during their mothers' pregnancy only to be born perfectly healthy. How many times have medical predictions turned out to be completely wrong?! Enough times that urging abortion at the first sign of impending "problems" is definitely out of line! Even when there ARE "problems," many special needs children are well loved, a joy and blessing to their families. It is an insult to them at the very least to say that abortion is the only answer in situations like these.

We have been blessed to have regular appointments with medical professionals who are kind, compassionate, and generally understanding of our desires to support Verity however we can--at least during pregnancy. Honestly, I am not entirely sure what will happen after she is born. We are making our intentions as clear as we can, but if we run into major issues and she needs significant support, I am not familiar enough with folks at the university medical center to know exactly what their responses will be. 

One of our many prayers for after Verity's delivery is that God will graciously make the hard decisions for us...that we won't be faced with having to decide about something that isn't clearly right vs. wrong. Our deepest desire is to bring Him glory in all things, and we pray daily that Verity will fulfill the purposes God has for her life, however short or long it is here on earth. And the last thing we want to do is muddle through murky territory trying to figure out how to help Verity physically and yet somehow unintentionally hurting her or causing other people who are following her story to miss seeing God's hand in everything that is happening.

But regardless of how the details of Verity's earthly life play out...the fact is, SHE IS ALIVE. Very much so, according to the movements in my belly! And she deserves the same opportunities to live, breathe, grow, and thrive as any other baby who is born alive. 

Prayerfully, families like those represented in our Trisomy community will help change the culture in the medical world of assuming the worst. And prayerfully, caregivers will remember their higher calling to care for and support LIFE instead of encouraging death.

Practical Love

My sweet and long-time friend Erin B. posted this on my Facebook timeline yesterday morning:

Beverly...do you have any ideas for those of us who live far away from you all, but would like to offer some physical support to you and your family?? Gift cards to restaurants or local grocery stores,....if so, what restaurants and grocery stores would be most helpful to you? We are definitely lifting you all up in prayer daily and would like to show our love for you and your family....and I am sure your other long distance friends would like to as well.

It wasn't long before other friends started chiming in with their desires to help as well. I confess I shed tears each time I read a comment. Honestly, I feel I don't deserve the outpouring of love and encouragement...and this is something God has been revealing to me about myself. I used to think these feelings were because I was independent and it has always been difficult to admit I need someone's help. But through a number of amazingly sweet and well-timed messages, cards, texts, a theme has emerged, one that is finally getting through my thick skull.

"You are so loved."

I don't know how many times I have read that sentence or a variation thereof in the past few months. In our family, we freely and frequently tell each other "I love you." I wouldn't have thought that receiving love was an issue for me, but somehow, just in the last couple of weeks, I've felt a growing awareness that YES, it is an issue (for whatever reason), and I need to stop skimming over these words and ponder, meditate, chew on the fact that I AM LOVED.

"I have loved you with an everlasting love;
    therefore I have continued my faithfulness to you." Jeremiah 31:3

After failures like those I detailed in my last post, it's easy to feel undeserving of good things. And yet, that is exactly the point of grace! We DON'T deserve God's love. We DON'T deserve the opportunity to spend eternity with Him in heaven. But He loves us and pursues us while giving us the choice to receive or reject Him.

As for me and my house? We choose Jesus. But regardless of our daily choices, actions, words, attitudes--His love never fails. It isn't dependent on our behavior, thank the Lord!!

And so, being reminded of these truths (there's Verity's name again! Oh, how much this little one is teaching me!)...I humbly and gratefully open my heart to God's love that is DAILY being poured out through His people. THANK YOU, dear ones, for having it in your hearts to serve, love, and care for me and my family!

In considering what some of our practical needs might be upon Verity's arrival, I have to confess that honestly, the biggest struggles will likely be the things I currently struggle with on a day-to-day basis. It's hard to admit what an enormous challenge it is simply keeping my family fed and semi-organized; I never asked for a large family (but I'm so very thankful we have one!), yet I feel the pressure of looking at least minimally capable of keeping it all together, lol! So when I consider that there's a chance we may be spending a lot of time at the hospital and/or traveling back and forth, keeping all these bellies fed (with minimal stress) will probably be one of the biggest challenges. I have some amazing teens who are becoming very capable in the kitchen, but keeping easy-to-prepare foods (that are reasonably healthy) within reach will be helpful for anyone doing meal prep.

So, ideas for gift cards:

• Commissary! I am pretty sure I saw signs posted that there are military commissary gift cards available.
• Trader Joe's (we love some of their frozen offerings like gnocchi and pasta and orange chicken--even Kenna can cook those meals!)
• We don't often buy groceries in our town because it's more expensive, but a chain grocery store we do have is No Frills.
• Some folks asked about restaurants...we don't eat out often, but Chick-Fil-A is a family favorite, and we've discovered we all enjoy Freddy's as well!
• There is a Pizza Hut in our small town (although the more refined tastes prefer the locally owned Adriano's Brick Oven Pizza, lol).
• While grown-ups may eschew McDonald's, there is also one of those in our little town, and it IS a treat for the kids!

The baby shower our church family is planning for Verity will likely be a money tree/gift card thing. We will use cash toward Verity's clothing and diaper needs and any special items needed for her care (we obviously still aren't sure exactly what she will need, so we don't really know either what items are covered by insurance, etc.).

Thank you, thank you, thank you for even asking how you can help. I often feel that there are such greater needs in the world...that our journey with a Trisomy 18 baby is, in comparison, something that "should" be so much easier to deal with than [fill in the blank.] But I can't deny that this road has been every bit as hard as--and probably even more difficult than--having our 6th baby while Daddy was deployed to a war zone for a year! I learned to ask for and receive help during that time, and I'm re-learning the importance of that same lesson.

"But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together." 1 Corinthians 12:24-26

This Week's Appointments

We had two appointments on Tuesday (both of which Ted was able to attend with me): Verity’s ultrasound followed by my first OB visit with one of the doctors who may very well be there for her birth. Dr. T was actually the one who called me back in September when the amnio test results confirmed the Trisomy 18 diagnosis, and he is very much like I pictured him—a grandfatherly, (extremely) chatty gentleman who is personable, kind, and compassionate. It was a bit hard to get a word in edgewise with all of his various stories, but overall, I like him, and we were able to give him a copy of our birth plan as well as two research articles that I want to be sure our doctors read ahead of time. This afternoon he has a meeting with other doctors on our team, during which they will be discussing our case, and I requested that he share the birth plan and articles with everyone involved. Prayers that this actually happens would be welcomed…

Anyway—the appointment itself was uneventful but allowed us to verbally emphasize our wishes concerning supporting Verity at birth based on her physical needs and not simply her diagnosis alone. Then, since we were his last appointment of the day, Dr. T took us to the Labor & Delivery floor, as we had not yet figured out exactly where we need to go when the time comes. I feel much better just knowing how to navigate all the corridors and elevators, lol. A nurse gave us a quick tour of the area and answered some questions; she was going to peruse our birth plan as well before giving it back to Dr. T to make copies of to place in my chart and pass around.

The ultrasound showed that Verity continues to grow, holding firmly to that 4^th percentile, but at least she IS gaining. They estimate her to be about 4 pounds, 1 ounce, which honestly doesn’t sound so scary, especially since I have seen much lower birth weights in both Trisomy AND healthy babies who are born prematurely! This alone gives me peace going forward; even if I were to go into labor this week, for example (not that there are indications that will happen!), she would stand a much better chance than if things started rolling a month ago. I think we were kind of expecting early labor based on what we learned initially, but after reading that a third of T18 babies actually come post-term, I’m actually starting to assume that will be our story. I know one should never assume, but somehow it seems almost more likely than not, even though I can’t explain why I feel that way. Not that I WANT to be pregnant that long, and perhaps it’s a bit of a denial of reality, trying to delay the inevitable transition that MUST be made no matter when it happens.

At any rate, Verity gave us some lovely views of her little face, showing poochy cheeks and growing hair. She is as active as ever, and her “practice breathing” in utero (diaphragm moving up and down) makes me wonder if she will be one of the fortunate T18 babies who actually DON’T need respiratory help. I have no idea on that score…perhaps a question to ask my Trisomy community, but really I don’t know if anyone can tell us anything about that or not.

Chubby cheeks!

Arm across face

Hair is growing! Funny how we can see it's longer than last time!

Sweet little fist...looks like she's sleepily rubbing her eyes!

We didn't get great 2D profile pics this time, but this was the best.

Feeling Loved

When you receive a book in the mail from a friend the same day a different friend sends you a link for that same book...

When you receive multiple hand-written expressions of support and encouragement in your mailbox...

When your phone buzzes throughout the day with messages brimming with prayer and God's promises...

How can I help but feel God's tender love?!

Supportive Friends, Part 2: Connections

Our family has been overwhelmed (in a good way!) by the love and support we have seen over the last few weeks. One way a number of people have reached out to us is by sending messages telling us about someone they know or have heard of who has experienced a similar pregnancy diagnosis to ours.

I think it's human nature to desire and seek out connections with others who have commonalities with us. Being more of an extrovert myself, I usually thrive on relationships, both in-person and online. But I have a confession to make...right now, I don't feel I have the mental or emotional capacity to personally respond to what feels like an inundation of new contacts. While our family made the decision to be very open with Verity's story, letting others in to read about and experience this journey with us (if they desire), I am not sure I'm ready to venture too far out of my "comfort zone" just yet. 

Do I accept all of these "Friend Requests" from people I don't know personally? Do I need to write to everyone whose contact information I've been given? After pondering and praying for awhile, I feel peace about saying NO in many cases. 

This is not to say I don't want to hear from other families who have already trekked down a path that looks like ours. Indeed, I've already been blessed by some connections set up by mutual friends. It is simply amazing how many folks know someone who has experienced or is currently experiencing something like our journey with Verity. And it's humbling to read so many sweet messages of love and encouragement as friends reach out to me in private messages offering someone else's contact information.

It would be a full-time job to keep up with all these stories...as much as I would love to! So here is a general, blanket response I give here in a public forum, again speaking personally and not necessarily for every parent in my situation: I am happy to hear from others who have been down a similar road, but please know that I do not feel I am in the position to be the one making initial contact. And please do not be offended if I don't reply right away to an offer for a "Trisomy 18 set-up;" it's only because it's not the only "blind date" I've been approached about. ;-) If people would like to email or private message me their story, that is the easiest way for me to absorb information and glean from other people's experiences...on my own time, when I'm emotionally able to handle whatever it may be. (I have yet to watch a video a sweet lady sent me about her own darling baby girl...I started watching it and realized it was set to music...and knew I would be a sobbing mess before it was over!! Since I was getting ready to leave the house shortly afterward, I opted to wait to watch the whole thing!)

From friends who say they really don't know what to say to friends who are moved to share someone's story with me, I have to say we know some truly wonderful people! Please know we are deeply moved by the prayers and concern of so many.

Supportive Friends, Part 1: What to Say??

A sweet long-distance friend, with whom I frequently chat back and forth via a walkie-talkie app, heaved a sigh of apology after she sent me an utterly normal message. Some time after she had recorded this (admittedly snarky) comment (we share a sarcastic sense of humor), she saw a message from me saying I was having an emotionally difficult day. She then felt bad and sent this:

"I never know whether normalcy is best, or talking about Verity is best...so...if ever I just screw it up, please tell me, because I have no idea what I'm doing."

Oh, how I love this dear woman! I have no idea what I'm doing, either!

Truly, I'm not sure how I would be friends with me. What would I say? What should I NOT say?

I can by no means speak for others in situations similar to mine, but for those in my personal circles, I can say that in general...normal is best. But...not at the expense of ignoring what is going on. Does that even make sense? I appreciate trying to have a sense of normalcy and routine. This isn't something I want or need to talk about every single time I see you. At the same time...pretending nothing is wrong and ignoring the elephant in the room feels awkward, too.

There are days when it really doesn't matter what you say to me or how you say it...I'm going to cry on your shoulder whether you're ready for it or not. (Thanks, Brenda, for being brave with and for me Sunday morning right before the service started!!) There are other days when there is inexplicable strength coursing through my veins and I can speak of difficult things without batting an eye. So...possibly the easiest route for those whom I encounter on a regular basis might be to just go with the flow. For your own comfort's sake, you may wish to feel me out with a "How are you holding up today?" type of question...but be prepared for an honest answer, because my emotions are at surface-level these days!

In the grand scheme of things, it honestly does not matter what you say, or even what you don't say. Another friend responded to our news about Verity this way: "I have no idea what to say except that I love you and I care!"

And really, that's all we need to hear from our friends anyway.

Support

Flowers from Ted's front office and a family from our church

The following are just SOME of the amazing words of support and encouragement we have received over the last week. God speaks...definitely through His Word, which we cling to, but also through His people who are filled with His Word and His Spirit!

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My heart is strangely joyful knowing that our King is holding you in His arms. I see it so clearly!

Just had the image of Moses held up by Aaron and Joshua when he felt weary from standing to proclaim God's victory before the warring Israelites. Know beyond a shadow of a doubt that we stand supporting you, encouraging you, holding you up to the Father, before a world at war against life, so that when you don't have the strength (physical or emotional) to stand, you will continue to bring glory to our ever Merciful God and to proclaim the Truth of his Goodness to a broken nation. We love you and sweet baby Verity.

We stand in agreement with you that God's peace is beyond our understanding but so needed every single day! Great is His faithfulness!

I read Ps. 111:7-8 this morning in the New King James Version, and it really spoke to me, right after your message:  "The works of His hands are verity and justice; all His precepts are sure.  They stand fast forever and ever, and are done in truth and uprightness."  Praying for you and your family today!

I don't have words of wisdom to share. Just know that I simultaneously weep and rejoice with you regarding your sweet little girl. Thank you for involving me in your early circle of prayer and inviting me to walk this with you in prayer support.

May God be glorified every moment of this process. I pray that someone that you meet--a doctor, a nurse, an ultrasound tech, someone--that does not know the Lord will come to know our sweet Savior because of you and this beautiful baby.

Thank you for your openness and vulnerability. I will certainly be praying specifically for you, your little girl, Ted and your other children. You're right, God IS good. Always. 

I too carried a sweet little baby boy knowing that he would pass away after being born. Beverly, saying goodbye to my son was the hardest thing I've ever done, but feeling God hold me through the entire ordeal and seeing how he worked even that gut-wrenching situation to accomplish good in my life is also one of the biggest miracles I've ever experienced. 

I am praying for you and Ted, for Verity, and for the rest of the family. I'm sure I don't have any new words or Scripture that others haven't already shared... but just know that I am lifting you up in prayer to our Father. Much love!

Hello, my friend.  I am thinking about you.  I am praying for you!  I pray that every time the Enemy whispers "worry" you will hear the reassurance of the Holy Spirit that much louder.  When the flesh cries out "I can't do this" that your heart will stand firm in God's truth knowing that with Him you are strong in your weakness.  I love you and your family!

I am so very sorry. Thank you for including me in your circle- know that I am praying for you, Ted, your little girl, and your whole family. I've walked through the fear of the possibility of such a diagnosis, and can't imagine having to face this reality head on. Thank you for your honesty and allowing us to hurt with you and pray for you. It's okay to be scared and grieved and angry and all those things.You are in my heart and I am here for you. I love you, sweet friend, and pray for God's indescribable peace to cover you all.

My dear friend. I sit with tears for your pain and your faith. I am proud to know you. I will continue to pray for Peace to wash over you, relentlessly like waves - always sure to be coming in again.

I wanted you to know that I am in prayer for you and Verity and your family. Your faith and trust in God is incredibly evident and a true witness to me and I'm sure others. May God continue you to bless you.

I read your message right before teaching my high school biology class, and we started out or day praying for you and  your family, including this precious baby girl.  In my quiet time this morning I read Is. 43, and when I read your message, I just went back to that passage for your baby (and for you):  "But now, thus says the Lord, who created you, O Jacob, and He who formed you, O Israel:  "Fear not, for I have redeemed you;   I have called you by your name; you are Mine.  When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you.  When you walk through the fire, you shall not be burned, nor the flame scorch you. . . ." 

God immediately put this scripture on my heart: 
Isaiah 41:10: ‘Do not fear, for I am with you; Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.’
Please know I am praying for you right now, sending strength and comfort. I'm hugging you right now. I'm here for you. Love you dear Sister in Christ. 

May God open doors for you to be witnesses to his glory, peace, love, and grace. Prayers for this little one that he/she will be a testimony to his love and faithfulness. Prayers for wisdom for everyone involved, and that each step brings you closer to him.

I am praying for God to continue to cover you all with His peace. This peace passes all of our understanding. It strengthens us through any and all circumstances. 

With the journey and convictions leading to this point, I know the picture is so clear now.  But I also know that doesn't fully take away the hurt and fear completely. I love you and yes, God is good.

I just had the privilege to pray over your family and your journey!  Thousands of things flood my mind, one resonates and that is that He is God and we are not and thus His sovereign hand has ever detail in perfect order.  I am so grateful for your feet which are planted firmly in Him.

I will keep this brief knowing how precious time is and how overwhelming just communicating with those you love can be. I will be praying for ALL of you daily and like this morning continually as God speaks to my heart.  I know He will lead me in what and how to pray as I seek His face. The one thing that I want to share and I know you already know is that God is SUFFICIENT!  In my own journey of life this is one of the things I cling to over and over again. I wish I could be there and talk face to face or just sit and be with you or hold you but I know God is providing and will provide his ministering "angels" and I will stay on my knees and know I am here. I am humbled that you would trust me to pray, and pray I will. I love you.