18 Ways Verity Has Changed Our Lives

This is our FIFTH year to celebrate Trisomy Awareness Month! March is the third month, and as a trisomy condition means there is a third chromosome, it makes sense that March 18 would be Trisomy 18 Awareness Day! In honor of the occasion, here are 18 ways our sweet Verity Irene has changed our lives...

1. We are much more aware of the needs of individuals who are "different." Not only that, but we are also sensitive to the needs of parents and siblings of special-needs children. It truly does take a village to support not only those who have a special condition, but also their caregivers.

2. We are more patient. (In general. On most days. OK, really, this is still a work in progress...but Verity has furthered the progress!)

3. We are more compassionate. I love seeing my other children interact with Verity! (I sometimes wish the compassion went beyond Verity to each other, sigh...)

4. We have learned we can exist on an average of 1.7 hours of sleep...in an entire week. (But we are VERY grateful for Verity's CPAP, which has increased that average exponentially since she got it almost 2 years ago!)

5. We have developed lightning-quick reflexes in order to grab the suction machine, catch projectile vomit, or stop the feeding pump when we realize it is feeding the floor (or the bed or the carseat or...).

6. We've learned to navigate insurance, doctors' offices, MyChart, Relay Health, therapists, and an ever-changing calendar. We may not enjoy dialing those numbers, but we can make phone calls to get answers AND action.

7. We take nothing for granted...

8. ...And yet we exist in a type of holding pattern for "normal" as it is defined for the moment.

9. We are thankful to know and interact with an amazing community of professionals including home health care nurses, doctors, therapists, teachers, and more who help support Verity in reaching her highest potential and living her best life.

10. We are now firmly entrenched in the Trisomy Tribe, an amazing community of families all over the globe, all connected because of an extra chromosome, as we share joys and triumphs, griefs and agonies.

11. We have opportunities to share HOPE with others because of our own journey. 

12. In fact, Verity is THE reason we are venturing into the world of non-profits as we set up an official ministry to support families like ours! While it is very much a work in progress (to include a web site still under construction), we are excited to move forward and carry out this vision that has been on our hearts for several years now.

13. We have a new vocabulary, not unlike the months I was a new bride/Air Force wife learning the acronyms! Sats, pulse ox, CPAP, VSD, ECMO, AFOs, DME, and more...I never would have known what these were if it weren't for our and our friends' journeys.

14. "Accessibility" is no longer an abstract concept.

15. I can't necessarily speak for all my other family members...but personally, my prayer life has deepened.

16. We live in gratitude. Literally every day we thank God for the many, many blessings we enjoy.

17. We find joy in small things. (Verity's giggles and squeals are a near constant source of delight.)

18. Our faith is stronger than ever. We aren't living in denial--we know we may face unspeakable grief at any moment. But the God who has brought us through the difficulties of life this far is the same God who perfectly and wonderfully made little Verity, our precious gift wrapped up in Trisomy 18 packaging. We can trust Him with the future.

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.

Let Freedom Ring!

This is an Independence Day post, but I will start with a flashback to Christmas vacation when I was tucking my 3 little boys in bed. Lucan, my 8yo, was talking about something (I don't recall what exactly) that would happen in the future, and he was rattling off the ages he and his siblings would be at the time. His words were matter of fact: "I'll be 12, Zaden will be 10, Seanin will be 8, Rhema will be 6, and Verity will be 4, if she's still alive."

If she's still alive?!?!

My breath caught in my throat, and a knot formed in my stomach.

I don't remember how that conversation ended, whether I said anything in particular or not. I only remember standing outside of the bedroom after the door was closed and sobbing my eyes out.

Two months later, on February 28, 2018, Verity turned one year old. It was a huge milestone. Statistics we had heard since Verity was in utero indicated if she reached that one-year birthday, she would be one of the 5-10% who did.

The very next morning, March 1, Lucan ran upstairs to find his baby sister. When he saw her, his eyes grew round, and he shouted with excitement, "She's still alive!!!"

The weight of his surprise settled on my shoulders with a heavy realization: my sweet, tenderhearted son thought Verity would succumb to statistics now that her birthday was over.

And it hit me that twice now, my son had voiced the uncertainty of the burden under which we all were living, even if we didn't talk about it or acknowledge it...even if we didn't realize it was there to begin with.

Verity's birthday party came and went. Appointments, therapies, sleepless nights, little developments and progress, an overnight stay in the hospital, a bit of regression, more appointments and therapies, another hospital admission, recovery, more appointments and therapies, more developments...days slipped into weeks, which turned into months. And at some point in the middle of all this daily LIFE, I experienced a startling realization.

We had spent pretty much all of Verity's first year of life holding our breath, waiting...in a sense...to see if she would die.

Does that sound absolutely awful? I was heartbroken when I realized how true it was. We had said goodbye to more little ones in our Trisomy community than I could have imagined possible. Some of our closest little friends were in and out of the hospital, some fighting for their lives and making miraculous recoveries, while others fought valiantly only to slip away.

The unspoken question in our house for so many months--How long would Verity be with us?--somehow evaporated. We submitted requests for therapeutic and adaptive equipment. We registered for the Support Organization for Trisomy family conference. We stopped subconsciously wondering whether our baby would leave us and simply enjoyed living with her.

Do you know what that is, friends?

Freedom.

Freedom from fear and worry.
Freedom from uncertainty.
Freedom from depression and anxiety.
Freedom to savor and relish the little things.
Freedom from expectations.
Freedom to simply...be.

I'd be lying if I said we never feel fear creeping in. (A bout with aspiration pneumonia terrified me as I watched my baby struggle to breathe.) And I'd be misleading you if I said I never deal with uncertainty, or if I said I have managed to perfectly enjoy and cherish Every Single Moment instead of being concerned with what's for dinner or whether the toilets have been cleaned recently.

But overall? Our lives are characterized by far more joy than nail-biting fear. This is a testimony to the grace of God in our lives, to the growth He has allowed us to experience because of the sweet and precious gift He gave us in Verity.

I've told friends that I feel as though we have come out of a long, dark tunnel, that we are finally able to see the light and the beauty every day even though some days are still really hard.

And that to me is FREEDOM.

The Spirit of the Sovereign Lord is on me,

    because the Lord has anointed me

    to proclaim good news to the poor.

He has sent me to bind up the brokenhearted,

    to proclaim freedom for the captives

    and release from darkness for the prisoners,

  to proclaim the year of the Lord’s favor

    and the day of vengeance of our God,

to comfort all who mourn,

     and provide for those who grieve in Zion—

to bestow on them a crown of beauty

    instead of ashes,

the oil of joy

    instead of mourning,

and a garment of praise

    instead of a spirit of despair.

They will be called oaks of righteousness,

    a planting of the Lord

    for the display of his splendor.

--Isaiah 61:1-3

Best. Update. Yet.

Day 14
Today turned out to be a much bigger day than any of us could have anticipated. As I waited for Ted to arrive, I got word from our nurse that the cardiologists had ordered another echocardiogram. We weren't sure whether this was a good thing or a bad thing, so, being able to do absolutely nothing other than wait, I continued with my plans to make the trek to the Other Side of the Hospital Universe to shower. (Interestingly, the Infectious Disease Hallway smelled strongly of freshly baked chocolate chip cookies today...)

After Ted arrived and we shared a lunch from Schlotzky's, we got a phone call from Dr. M, the cardiologist who led the discussion with us last Thursday about Verity's heart. She explained why the team was requesting a new echo; the reasons were twofold:

1. There was some unexplained activity around the pulmonary vein--this is completely different from the issues we discussed last week, and they wanted to check it out more closely.

2. The large VSD, the one that Dr. A had initially told us would require surgery before Verity's first birthday...the large hole that in all likelihood would not close on its own, the way the smaller two probably would (and already have started)...yes, THAT hole...seemed to be starting to close "on its own." They wanted to see another echocardiogram to be sure.

Well! It's always good to get news that is much BETTER than one expects! Dr. M said she would call after the results came back, so Ted and I made plans for a milkshake date for the two of us and a much-needed massage for me.

While we were getting ready to go, Verity had a little episode: she pooped so hard that she had some reflux and aspirated stuff out of her nose. Her oxygen sat went down into the 70s, which meant the alarms started going off, but then the numbers climbed higher slowly but surely. Meanwhile, we were suctioning out her nose and repositioning her to try to help clear her airway. A nurse stepped in to help and was so calm about everything, I didn't think there was much of anything to worry about...but then I watched as the nurse quietly repositioned Verity, listened to her chest, and continued to hover over her and work with her, and then I noticed her little chest caving in with each breath. It was alarming: the numbers on the monitor were perfectly normal by this time, but she was clearly having difficulty breathing. The nurse suctioned out more junk, continued to work with Verity, calmly listened, wash, rinse, repeat. After a tense period, she was breathing more easily and the nurse seemed satisfied with what she was hearing (or not hearing), and the scary part was over. But it was definitely a wake-up call...I was reminded of the warnings from our Trisomy families that our littles can "silently" aspirate. Despite how well Verity has been doing thus far, we can't take anything for granted and must remain alert, especially if/when she gets sick.

I had a hard time leaving Verity after this, but we stayed around long enough to verify that she was doing much, much better and had two nurses saying they would specifically be watching her so that I could indeed go get my massage. I'm sure it won't be the last time I experience Mom guilt for leaving my baby. :-( (As an aside, I scheduled the massage because I haven't been able to turn my head to the right for the last few days; my muscles are that tight and knotted. I'm still sore and having difficulty turning that direction, but my shoulders and back are much less tense.)

Ted headed home after walking me to the massage clinic (about as far away as the showers, but in the opposite direction). As I was headed back to the NICU after my appointment, I got a call from Dr. M with the results of the day's echo. Sure enough, that large VSD is starting to close on its own! Whatever is going on with the pulmonary vein is not anything worrisome. The team wants to continue to monitor things, but as far as they are concerned, we can be released from the NICU whenever the doctor here is comfortable sending us home, and best of all...

THEY DON'T THINK SHE WILL NEED SURGERY!!!!

Verity does a victory dance of joy!

I texted the news to my sweet friend and prayer partner, who was here on Friday and prayed specifically that the holes in Verity's heart would close up and be healed. She wrote back right away to tell me this:

"Yesterday in children's church Zaden asked for prayer for Verity to be here on earth for a long time. We prayed that her heart would heal. Prayers of children I think avail much."

Indeed! Why do I marvel at all...I had wondered why God didn't show us via ultrasound the issues with Verity's heart so that we would know about that before she was born. Now I think what a blessing it is that we didn't know; surely it would have only added to the mental and emotional burdens we already carried throughout my pregnancy.

I praise and thank God for these answered prayers; at the same time, I am determined to stay yielded to His sovereign plans and purposes. I maintain that God is good no matter what our circumstances; I have wept with parents whose little ones were NOT healed, or who were NOT born alive. I don't understand why God has allowed our little Verity to live and (so far) thrive with such a positive potential outlook when so many other sweet children have had parents fighting for and with them and yet had to say goodbye all too soon.

I rejoice...yet I continue to ask God to let us not take anything for granted but rather help us to cherish what we are given.

Verity's Birth Story in Photos

Special thanks to my sweet friend Melissa of Melissa Pennington Photography 

for sharing her artistic talents with our family as a blessing to us...

and to all those who share in the joy of Verity's birth.

Assessments

RESPIRATORY SUPPORT
After Verity was born, of course the next thing to determine was what exactly her immediate needs were and what could be determined about her future needs. Clearly she had to have respiratory support, but we were thrilled when the CPAP and mask were removed within the first 24 hours and she moved to room oxygen through a nasal cannula. Even more astonishing was seeing her come off oxygen altogether on Day 5 and having her do so well; we are now on Day 6 and she hasn't had to go back on it!

Apnea is a huge issue with Trisomy babies. I asked the doctor about an apnea study, and she said they rarely do actual studies, but the monitors themselves are apnea studies--and nothing in all of Verity's monitoring has indicated any problems with apnea. I am encouraged every time I look at her monitors and see such regularity--perfect little heartbeat, high oxygen sats, rhythmic breathing...this changes when she's mad, lol, but even hearing her lusty cries makes me smile instead of panic. The nurses all know when Verity needs attention!!

FEEDINGS
Next: feedings. We figured she would need help eating, as almost all Trisomy babies do. She got an IV right away, followed by gavage feedings (through a tube, first in her mouth and later through her nostril--she did NOT like THAT process!). We were given a bottle of donor milk for her use, but after that was finished (a few days in), we did have to start using formula to supplement my own supply. But thankfully it shouldn't take too long before she is solely getting her nourishment from my breastmilk. The IV supplements stopped on day 2, and as with the oxygen, she didn't go back! Feeding amounts have steadily increased, and she has tolerated it all very well. She has no problems eliminating and really, really hates pooping and being in a dirty diaper! She lets us know when she's having a BM and clearly expects us to do something about it!

The last couple of days we have seen her respond to the breast, enough that my nurse today would really like to help us move toward breastfeeding first with gavage feedings afterward. I am hopeful but find it hard to be as optimistic as she is...still, Verity has defied all kinds of odds so far, so who knows?! She has latched and sucked several times during several different attempts, so while we haven't had any sustained suck-and-swallow action, all indicators are there that she CAN do this. (And for the record, she loves sucking on a pacifier!)

We have not done an official swallow evaluation; things look good, but I plan to ask if there are other more official things we can do in this area to give us the best possible chance of successful feedings.

BRAIN SCAN
We had requested in our birth plan to have a brain scan done, and that was in fact accomplished right away. Everything looked fantastic!

HEART ISSUES
We had also requested an echocardiogram, even though careful examination of her heart during the prime viewing period of my pregnancy indicated that she had no heart issues. It wasn't terribly surprising but was still rather discouraging to learn that there are, in fact, heart issues. Verity has 3 VSDs, basically 3 holes in her heart. Two of them are small and may very well resolve on their own; they are not concerning. The third, however, will require surgery before she turns one year old. This is very, very common for our Trisomy babies, and the fact that Verity has already proven to be a strong, healthy little girl bodes well for her surviving surgery. We were extremely encouraged when her heart did not show signs of distress when her oxygen was removed. While surgery isn't something in the immediate future, it could very well be a procedure that needs to happen before the military moves us in July. We would appreciate prayers for guidance in this area and that we get matched with the right team of specialists. We will be meeting with cardiologists tomorrow; so far we have only discussed this with Verity's NICU doctor (whom I absolutely ADORE) and the geneticist.

GENETICS
All of Verity's positive (and fast) progress is making us wonder if perhaps the amnio results gave us an incorrect diagnosis: perhaps, instead of full Trisomy 18, Verity may actually be partial or mosaic Trisomy 18. It is worth investigating, and if our insurance would pay for it, we would like to have her tested simply because it would help us adjust our expectations and allow us to do more research and investigating since we have focused our efforts on learning about FT18 and haven't read as much about PT18 or mosaic. Here are the differences according to www.Trisomy18.org:

Types of Trisomy 18:

• Full Trisomy 18: The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby’s body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.
• Partial Trisomy 18: Partial trisomies are very rare.  They occur when only part of an extra chromosome is present. Some partial Trisomy 18 syndromes may be caused by hereditary factors. Very rarely, a piece of chromosome 18 becomes attached to another chromosome before or after conception. Affected people have two copies of chromosome 18, plus a “partial” piece of extra material from chromosome 18.
• Mosaic Trisomy 18: Mosaic trisomy is also very rare. It occurs when the extra chromosome is present in some (but not all) of the cells of the body.  Like full Trisomy 18, mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division.

Regardless of whether Verity has full, partial, or mosaic Trisomy 18, as you can tell, we are all pretty smitten!! We love that so many people around the world are praying for Verity. I hope you will do some searching to find other Trisomy families and read about their stories as well. Many of them have become friends of ours during this journey, and I am in awe of each precious life as well as the support and love shown through parents, siblings, and the villages rallying around these precious gifts.

Verity's Arrival

February 27 (big sister Kenna's 10th birthday) passed fairly uneventfully...aside from the fact that I had contractions pretty much all day long! Since this had become more common in the previous week or two, I wasn't sure what to make of it, although the contractions were definitely noticeable and more uncomfortable. Many people had prayed on Kenna's behalf that she would not have to share her birthday (she herself was adamant about this), and while I was fairly sure the Lord would grant this request, I did wonder, especially as the evening got underway and it got harder and harder to rest!

Our attempt at a normal bedtime was short-lived. Ted got maybe an hour and a half of sleep before I woke him up and asked him to please wake the girls and Grandma. Our photographer prepared to meet us at the hospital, and I finished packing. (I must say, in retrospect, I did a rather horrible job of packing this time! Ah, well, the important things were included...who needs shampoo anyway?!)

Kenna has no recollection of the two separate conversations she had with her dad about us leaving for the hospital...so...she did not attend Verity's birth after all. Charis, Rhonda, Ted, and I prayed together in the kitchen before we left the house, with Grandma staying behind to hold down the fort. Tobin had awakened during the commotion and hugged us goodbye, but no one else knew we were leaving.

We arrived at the L&D ward at 1am. I was so nervous that we would find out this was a false alarm after all--despite having some pretty painful contractions at home, hardly anything happened during the drive, and the contractions I did have after leaving the house were really not very intense. But I had felt it was time to go, even though there didn't seem to be a clear sign like I had prayed for. Turns out the mama instinct was correct; I was dilated 6cm when we arrived, with my water bag bulging out but still intact.

It was so surreal actually being in labor after waiting and wondering for what seemed like an eternity. The fact that it happened in the middle of the night only added to the dream-like quality of the whole experience. Still, I appreciated the calm and the quiet: peace. Overwhelming peace.

As per my birth plan, we requested an epidural so that in case something happened and Verity ended up in distress, I would be alert for an emergency C-section. We waited what seemed like a very long time for the epidural; it may have been around 2:30am or even 3:00 before it was in. I was afraid that things would progress too fast and it would get to be too late to get one! Thankfully the contractions were so minimally uncomfortable; honestly, it was the easiest labor I've had, other than I was just so tired from being awake all day.

After the epidural was in place, my contractions seemed to slow down. In fact, Ted had time to take a little nap in the rocking chair! It seemed strange to feel so good during labor! The epidural helped, to be sure, but the contractions hadn't been unbearable even before that. The main annoyance, if you will, was that my body would shake uncontrollably during each contraction, even though I wasn't yet transitioning. During this lull, I enjoyed visiting with my nurse and my photographer friend (herself a homeschooling mama of seven beautiful kiddos). Charis calmly worked on a crocheting project. The nurse mentioned that they were wanting to start pitocin, but I asked if we could first break my waters since that has often led to a speedy delivery in the past. Everyone agreed, and so that was the plan of action.

One of the blessings and answers to my prayers for Verity's delivery was that my favorite doctor, Dr. T who had been so proactive on our behalf, was on duty that night. Along with two residents, he was there during the last hour leading up to Verity's delivery. When he checked Verity's position, all of a sudden I felt as if we had entered a twilight zone: no longer was Verity head down, after weeks and weeks of always presenting herself in that position. We all agreed that a vaginal breech delivery was entirely possible; however, a quick ultrasound confirmed that she was actually transverse. Before I could blink, I was being tilted backward with MY head down! And hands were maneuvering my belly as the doctors worked to manually flip Verity into position. My sweet nurse reminded me that God was with us there, which snapped me back to reality a bit, and I began quoting Scripture aloud, any passage that came to mind, hearing her at my shoulder agreeing with my words, which were whispered prayers to keep me from panicking. [I'll list the passages at the end of this post--at least the ones I remember murmuring at the time--in case anyone is interested in reading them. :-) ]

The maneuvering worked, and Dr. T continued with his hands planted firmly on my abdomen to prevent Verity from moving again while my waters were broken. At this point I was at 8 cm, not completely dilated as was originally thought; the bag had bulged through and stretched the cervix to make it seem like I was complete. Verity's station was still fairly high, so we needed some contractions to bring her down and finish dilation. But contractions had pretty much stopped. So they upped my pitocin and sat me more upright to make use of gravity.

For a few minutes, nothing happened, so the doctors stepped out of the room to check on another laboring woman, and after another few minutes, my nurse decided to step out as well, telling me to ring if anything happened. No sooner had she left the room when I felt an enormous wave of a contraction with immediate pressure, so I rang that bell and she hurried back inside! We were ready to have a baby!

Easiest delivery ever from that point on: I pushed carefully a little at a time and there she was, all beautiful and dark-haired and perfect. I got to cuddle her on my chest for a few precious minutes while time stood still and I wept tears of joy unlike any I've shed over my other babies--and I've cried at seeing each precious face, because the miracle of life is something we never get over, nor should we. I watched Ted cut the cord and regretfully agreed after a short while that she needed to go; even love-filled eyes couldn't deny seeing that she was turning gray.

The NICU team was wonderful, and Ted, Charis, and Melissa (our photographer) accompanied Verity from that point. Perhaps I'll ask Charis to write a post about what happened from that point, because my experience was pretty generic post-partum, and who wants to read about that! Verity is the star of this story! But for my mama friends who care about such things, the only difficulty my body had in the aftermath of this particular birth is that my lower abdomen muscles ached in a different way than I've ever felt before, and this puzzled me until the doc reminded me the next morning, "Well, we did turn your baby!" Oh, yes! That did require quite a bit of activity that I wasn't used to, lol.

So, that is the story of Verity Irene's birth, fittingly occurring the same day as the Rare Disease Day that was happening on Capitol Hill.

Welcome, Verity Irene...

Born February 28, 2017, 04:05am

40 weeks, 3 days

5 pounds, 3 ounces, 18 inches long

My labor & delivery verses...in a variety of versions used in my memory efforts over the years:

I love you, O Lord, my strength.
 The Lord is my rock and my fortress and my deliverer,
    my God, my rock, in whom I take refuge,
    my shield, and the horn of my salvation, my stronghold.
 I call upon the Lord, who is worthy to be praised,
    and I am saved from my enemies.
Psalm 18:1-3, ESV

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10, NIV

Fear not, for I have redeemed thee; I have called thee by thy name, thou art mine. When thou passest through the waters, I will be with thee, and through the rivers, they shall not overflow thee, when thou passest through the fire, thou shall not be burned, neither shall the flame kindle upon thee, for I am the Lord thy God, the Holy One. Isaiah 43:1-3, KJV

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18, NIV

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12:1-3, NIV

The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.
Psalm 23, KJV

Hope for the Best, Prepare for the Worst

HOPE. It's a word I've seen over and over during this journey with Verity and her diagnosis. Edwards Syndrome, a condition I had never even heard of before autumn hit, has become an all-too-close reality over these past months. It has been exactly 5 months since I picked up the phone and stood in shock listening to a doctor tell me about Trisomy 18 while assuring me that my risk factor was "only 1 in 10" but that she recommended further diagnostic analysis.

In those 5 months, we have learned so very much. We have become connected with families whose lives revolve around this rare condition as they sacrificially love the precious little ones who have been entrusted to them. Five months: for some of these dear families, little ones have been born, lived, and died within that span of time. Some are even now fighting for their lives in hospitals. Some didn't make it to term but were born with dignity, cherished, photographed, and are still loved and missed.

When a new member joins the Rare Trisomy Parents Facebook page, the introductory message is often filled with fear--a family is awaiting testing results and has heard their child might have a rare trisomy condition, or they have just received a confirming diagnosis and are terrified of what the future will hold. It is a beautiful thing to watch comment after comment appear on the thread, with photos of beautiful children of various ages being posted along with words of encouragement and HOPE.

"There is always hope." 
"Never give up hope." 
"Hope for the best."

Hoping for the best undoubtedly looks different for each person, each family represented. Part of our own personal struggle during this journey is discerning what, exactly, ARE we hoping for?? In the beginning, it seemed enough to hope that Verity would be born alive and everyone in our family would get to meet and hold her. The more we learned and interacted with families who are raising living T18 children, the more we began to adjust our expectations: with no significant anomalies showing on ultrasounds, Verity certainly seems to have higher-than-usual chances of doing well after birth. And I've read and seen so much that has led me to prepare to be the mother to a special-needs child who will be with us "long-term." (Even T18 babies who do well only have approximately a 5-10% chance of reaching their first birthday; still, there are a number who are living well beyond the one-year mark.)

Our hopes, our expectations, swung from fairly dire on one side of the spectrum (we hope to meet Verity alive before we have to bury her) to the other extreme of the realm of possibility (we hope she will need minimal interventions and proves to be the exception to the Edwards Syndrome "rules").

The problem with emotions is that they don't stay in a box. Three weeks ago joy surged in my heart as I anticipated giving birth to Verity. Whatever happens, I know God is writing this story, and I desire to focus on HIM instead of ME. Our number one prayer from the beginning has been that God will fulfill HIS purposes for and through Verity. Thank the Lord for His steadfastness and for facts that don't change with our feelings...

A few nights ago when I was having regular (painful) contractions, I got up in the night to sip water and read over recent posts in the Trisomy parent group. The picture of a beautiful infant girl caught my eye, and I wept as I read her mama's announcement that this sweet baby was born February 16 at 42 weeks, weighing 6 pounds, 4 ounces, and lived exactly 48 hours before being taken to heaven.

It hit me like a tidal wave: Verity is already a full-term baby and looking to be a relatively healthy weight. I've been making assumptions I have no right to make. I sobbed. I begged God, Please...let my parents get here in time to hold Verity. The truth is, I really have NO IDEA what will happen once our daughter is born. I can't take anything for granted. God doesn't owe me a thing--rather the contrary! He gave His only Son, Jesus, as a sacrifice for my sin, the only sacrifice that would satisfy the requirements for atonement. Mercy triumphs over judgment because of God's incredible love for each person He has made...

...including medically fragile Verity...
...including her emotionally fragile mother.

I was a weepy mess that night. I went back to bed when the contractions subsided, hoping to get a bit of sleep, and I found myself in a dialogue with God. I'm not necessarily a "sign reader," seeing "omens" or whatnot in any and every circumstance, but it seemed that in the span of a few short days, gentle reminders were coming at me from all directions with a common theme of not taking anything for granted, that pain and loss and death are inevitable during our time on earth, that God's glory is displayed in our weakness, and that His purposes are loving, good, and eternal.

Whatever happens...whether it is the "best" or the "worst"...I believe God has been preparing us for it. I believe there is purpose in all of this and that Verity is (and will continue to be) bringing people into a closer relationship with Jesus. Her life AND her death will glorify her Creator.

We have almost come to the end of this pregnancy journey, and I'm reminded of the Scripture passage we included on our Verity photo cards that we have given out to so many people over the past few months:

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, 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 5:1-5

This hope is not an "I hope something good will happen" kind of a hope! No, the hope Jesus gives is the assurance that what God has promised is indeed truth. We named Verity to remind us and to share with others the TRUTH.

Have you been justified by faith?
Do you have peace with God through Jesus Christ?
Have you received grace?
Do you rejoice in having assurance of an eternity in heaven?

If so, then you can rejoice in any suffering you may be experiencing--even if, like me, you are weeping from time to time because of it.

If not, then know that you are in my prayers. We often pray for loved ones who haven't yet accepted or acknowledged that Jesus Christ is THE way, the truth, and the life and that no one comes to God except through Him (John 14:6). Verity's diagnosis 5 months ago caused us to specifically be praying that God would draw people to Himself through our baby girl and the journey our family has been given with her. Please know that Ted or I would love to talk with you if you have any questions about any of this!

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love. 1 John 4:18

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).

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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!

Prayer Requests from Beginning to End

We have reached 38 weeks with no signs of early labor or anything unusual! Even as I thank God for this milestone and for the positive reports we keep receiving, I am sobered as I consider the multiple stories I have encountered over the last few months of Trisomy 18 babies who were stillborn or born a few weeks early only to leave their families not long afterward. I don't take much for granted these days, and though I'll never understand many of the WHYs that are inevitable when considering our journey compared to others' experiences, I know our God is sovereign and worthy of praise no matter what the circumstances. I pray that we will continue to assert that truth if or when we reach a much different end than what we may be imagining.

I was reminded of the list of prayer requests I had jotted on paper very soon after we received Verity's diagnosis; several close friends had asked how they should pray, and I numbly wrote whatever came to my foggy brain early one morning to share with them. Looking back, it is clearly a Spirit-led list. I share it now as a testimony to the way God has led us thus far on this journey...I'll add present-day thoughts to the original list in brackets.

VERITY IRENE--Due Date: February 25, 2017

Prayer Requests

• Kenna's birthday protected (Feb 27)
• Salvation for loved ones
• A live birth and a time shared with family and friends--that our children will feel connected to (and not repulsed by) their sister. [I have absolutely no concerns about this! While I don't know for certain that Verity will be born alive, I can't help but feel that she will...and if not, we will deal with that as the time comes. But our children already are totally in love with their baby sister.]
• That we will see her through God's eyes--see her true beauty and get a peek at some of His marvelous purposes for her life. [Again, this is already happening! What a blessing!]
• Protection during pregnancy for me...physically, the challenges of being older, plus higher risk for preeclampsia. Emotionally. Mentally. [God has been gracious to me indeed; this pregnancy has been hard on my body, but overall things have gone and are going well.]
• Wisdom in getting help/care when needed. [See addendum below this list.]
• Hearts that are soft and teachable--protection against bitterness, anger, resentment, etc. Special understanding for the children especially. [While I believe that we have ALL learned and grown so much in these recent months, this will be an ongoing petition before the Father's throne.]
• That God will reach people who need Him, people who need truth and encouragement. 
• That God will use our story to bring understanding of the value of LIFE.

Addendum:

As our due date approaches and my body does its normal thing (i.e. frequent contractions), a concern I have is that we will KNOW with certainty when it's time to make our way to the hospital. The last 4 babies I have delivered all gave indication of imminent labor that ended up going nowhere. We have even been to the hospital thinking we were having a baby only to turn around and go back home. (This is rather embarrassing when you consider just how many children we have birthed...) But the fact is, I often have periods of regular, painful contractions, and while I've never had a dramatic in-the-car or at-the-hospital-doorway delivery, the fact that Verity is going to be smaller than the average baby PLUS the fact that she is our 9th delivery could very well mean that her entrance into the world could be incredibly swift!

So, considering that under optimal conditions it will still be close to 45 minutes from our driveway to waddling into the L&D ward at the hospital...will you join with me in praying that God will give us clear signs that we need to go? A good friend suggested praying that my water would break ahead of time, which I thought was a brilliant plan since that has never happened before I'm in active labor at the hospital! But again...I need a CLEAR sign...I don't want to be wondering, "Did my water break, or not??"

It's funny, now that I think about it, I haven't really "worried" about what will happen once we get to the hospital; my focus now is getting TO the hospital in a timely manner! However, here are the things we are praying concerning the hospital part of the adventure:

• That the right medical team will be assembled...while I have definite opinions about who I prefer to be (or not be) present for Verity's birth, I trust the Lord will work out His sovereign purposes.
• That we will be able to clearly communicate with everyone involved not only in the birth, but also in assessing Verity's needs once she arrives.
• That our family will be a blessing and a witness to any and all medical staff and other families we encounter during our time in the hospital.
• For the right timing for my parents to be able to travel from Wisconsin to be with us...my mom plans to be here as close to the birth experience as she can, and then she will remain with us for a time afterward. I value her experience as a retired nurse who did home health care for years and years, often caring for children and adults with special needs!
• That every last detail will be attended to--that we will be able to look back and marvel at the many ways, big and small, that God provided for every person's needs during what could otherwise be a chaotic, tumultuous time. I'm thinking especially of things such as child care for little ones at home so that Charis, Kenna, and maybe even both grandmas can be at the hospital for the actual birth. So that would include a decent time of day that we leave for the hospital with enough notice for friends to help!

Thank you to all who have prayed for us along this journey! I am so humbled and grateful for the many, many prayers on our behalf. We would not be where we are today if it weren't for all of those petitions and prayers of faith.

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.