My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Wednesday, March 18, 2020

Trisomy 18 Awareness Day...in the Midst of a Pandemic

March 18, 2016. 
I had never heard of Trisomy 18, nor had anyone else in my family or circle of friends, and while I was somewhat familiar with Down Syndrome, Edwards Syndrome was certainly not on my radar. (Nor, I might add, was having another baby.) On this day, I was likely homeschooling 7 of my kids while chasing baby Rhema around the house, trying to keep her out of mischief.

March 18, 2017.
Verity Irene was a tiny little mite who had been home from the hospital less than 24 hours after spending her first 17 days of life in the NICU. She had an NG tub she managed to dislodge a few hours after this photo, resulting in a frantic trip to the ER that night. Good grief. We hadn't even made it a whole day and already there was chaos! How in the world were we going to manage caring for this fragile, precious little girl AND keep up with our 8 other kids?!


March 18, 2018.
Verity Irene passed a huge milestone: she turned ONE YEAR OLD! Statistics had told us only 5-10% of Trisomy 18 children reached their first birthday. I'm thinking those are old statistics...but regardless, who cares?! Does this look like the face of a girl who gives a flying fart what statistics say?!

March 18, 2019.
Verity has now passed her 2nd birthday. She's no longer a tiny, fragile little baby, though she is small for her age. She is developing at her own pace, and we cheer at her every accomplishment. The world might not award much significance to her achievements--or even to her very life--but we know without a doubt that she is a gift from God. She enriches our lives and brings us joy in a way only she can.


March 18, 2020.
Verity Irene, like ALL of our Trisomy friends, is clearly a Trisomy RULE BREAKER!! At 3 years old, she has blessed our family and a growing circle of friends just by being who she is, the unique person God created  her to be.

It is a strange time we live in to be sure. As I type this post, Trisomy Awareness Month has been overshadowed by COVID-19. I am not fearful, per se, of the virus invading our home, although I acknowledge it could definitely happen. I choose not to live in fear, but we are definitely taking precautions. Of course, some of those are not of our own design, as schools have shut down, my oldest daughter's university campus is closed for the year, churches have switched to livestreaming, appointments are pushed farther down the calendar, and so on.

But here's the thing on my mind during today, my fourth Trisomy 18 Awareness Day: IF my child gets sick (whether due to COVID-19 or another illness), and IF we need to get her into the hospital...WHAT IF the hospitals are overrun? What if by the time we get triaged, there aren't enough beds or equipment for what my special girl needs?

And even if it isn't Verity, WHAT IF this happens to our little Trisomy warrior and princess friends??

WHAT IF doctors find themselves having to choose WHO gets life-supporting equipment, time, effort, and resources?

What will happen to those society has already labeled "incompatible with life?"

THIS is why I think Trisomy Awareness Month is important to talk about, even though our newsfeed is already saturated with articles about the virus, the economics, the responses, and whether what we're doing is enough or is overkill.

Wait. "Even though??" No, ESPECIALLY since we are in the middle of a pandemic! This is ESPECIALLY why I think bringing awareness to some of our most vulnerable citizens is important.

And so here I am, standing in my little corner, washing my hands and keeping my family at home, shouting from my computer.

Please...please. Please think of people like my precious Verity, like her friends, and like their grandparents or others who are especially vulnerable. Please don't scoff at recommendations or skip out on washing your hands.

Let's get through this together, OK?

She is THREE!!!

We had a wonderful birthday celebration on February 28, 2020, rejoicing in the THREE years God has given us with Verity Irene! We had an open house celebration, which...in hindsight...probably wouldn't have happened if we had known we'd be under Coronavirus quarantine-type measures shortly afterward. But praise God, all our friends and we are still healthy, and so we are grateful that we had the opportunity to celebrate with friends and family on Verity's special day! Verity wore 2 different party dresses after "anointing" one of them...so much for trying a taste of her birthday cake?! Oral eating may never be a thing for our girl, but we are so grateful she is HEALTHY and HAPPY and that we get to share life with her, because she is most definitely

Compatible
with
LIFE!!!





Thursday, February 27, 2020

A Year in a Post

Wow. It's been over 13 months since I wrote a post on this blog! How easy it is to pop a photo or video on Facebook or Instagram and share a slice of life. And yet...how fleeting it is. I miss journaling about the intricate details of our life. I miss being more thoughtful and processing precious moments.

How has it been a year since we celebrated Verity's 2nd birthday?! This evening, on the eve of her 3rd birthday, I decided to dust off the cobwebs from this blog and look back over the past 12-ish months to see how far we've come! Ready?! Here we go!

January - February 2019
Verity got 2 piggie tails for the first time! Finally enough hair! Also a new set of AFOs to help hold her feet in a flexed position following her tenotomy surgery in November 2018, after which she wore casts for several weeks. These AFOs were stinkin' cute, but unfortunately not very functional. We went back multiple times to make tweaks, and at one point we had 3 therapists involved with the orthotics guy, who is a genuinely patient and good man and has worked tirelessly with us to get things right! The third pic below shows Verity the day of her bronchoscopy, a sedated procedure which allowed the ENT and pulmonologist a good look at Verity's airway and lung "juices." We learned that Verity's anatomy was not causing her OSA (obstructive sleep apnea), i.e. the ENT did not need to remove tonsils or adenoids. We also learned that while Verity still had problems with emesis, she was NOT aspirating into her lungs. Hooray! But boo...Verity did have to start prophylactic antibiotics after having a third UTI in several months.





2ND BIRTHDAY! February 28, 2019
A celebration with our church family after the service. Our little unicorn got a special handmade unicorn!




March, April, May 2019
First haircut, ball pit (we graduated from a cardboard box to a plastic swimming pool that we can pull out and play with in the house), therapies, park days, Easter (and naps), getting arm braces to help with weight bearing, and another sleep study, which resulted in us getting a CPAP set-up for Verity in early summer. It has made SUCH a difference for her (and our!) quality of sleep!! We got another good report from the cardiologist, who only sees Verity once a year now.










JUNE 2019
We had a quick road trip to Iowa to drop off our son for a mission-type camp and then visit friends for a few days. Back home, we saw Verity's urologist for a check-up after her regular abdominal scan (which looked fabulous), and he stopped the antibiotics. Hooray! The photos below are a few of my favorite pics from our summer photo shoot with Melissa Pennington, which took place in Iowa:




JULY - SEPTEMBER 2019
Honestly, I don't remember a lot of detail from this time period, mostly because the property management agency managing the house we were renting informed us that, despite telling us less than 24 hours earlier we could renew our lease, instead served us a 30-day notice. Long story short, we busted our tails to get out of that house and into a God-provided dream home in the woods! What could have been an incredibly difficult ordeal for our big family turned out to be an opportunity to put roots down in a location we deeply love (Colorado). Verity was blissfully oblivious to our stress, as you can see in these random photos from this time period...others shown are big brother Tobin (helping Verity fold her hands during prayer time) and our sweet T18 friend Ember, who came through our neck of the woods over Labor Day weekend!






OCTOBER - NOVEMBER 2019
Visit from Grandma and Grandpa K in October...we enjoyed a day at the pumpkin patch (pictured: Verity rolling in the corn!) before the first snowfall two days later! We started the process of learning what our options are for preschool and therapies once Verity turns 3. The picture of Verity and me in purple was taken during an initial evaluation with the Child Find coordinator in our school district. (We wore purple...despite our smiles, we remember and honor our friend Beckett Hope, who unexpectedly went to meet Jesus in early November.) Verity is shown next in her CPAP mask at night, with a little silk sleeping cap made by one of her nurses since Verity had rubbed a bald spot on the right side of her head (combo of preferring to sleep on her right side + CPAP mask). The bald spot is still there, but smaller, and not nearly as noticeable! Another big event for our family: Verity's daddy retired from the Air Force after 22+ years of service! Having been told that in order to stay on active duty status, we would have to relocate our family, my husband decided enough was enough. It's been a good run; we are proud to have served our family; but it's time to grow some roots! Verity was a huge part of that decision. She is stable with caregivers, therapists, and specialists who know her history and are invested in her well-being. Additionally, we have kids graduating from high school who have been dragged around the world their whole lives, and we are thankful we can give them a place to truly, finally, call HOME. Spending Thanksgiving with all our Colorado family was especially sweet--our first Thanksgiving in our new home, with Ted officially retired. God is good.







DECEMBER 2019 - PRESENT
The ponytail photo I thought was a fun comparison to the first one of this massive post with her two teeny ponies. She's grown a bit, and so has her hair!! Christmas was so magical this year...Verity really engages more with her surroundings, and she stared at the Christmas lights, absolutely mesmerized. When lying on the floor near the tree, she managed to scoot and wiggle her way underneath the branches, where she could play with the lights and tree itself. The other pictures are a slice of life...she's not fond of therapy, but she does occasionally bear some weight on her legs! She isn't yet sitting up completely by herself for more than 30-60 seconds at a time, but we know she COULD if she WANTED to! She isn't officially crawling, but she can maneuver and roll around. She has a Kid Walk on loan, which allows us to get her standing in her AFOs, and then she is free to make it move. (I'll try to get a video, but that will have to be posted on Facebook.) I know there were a lot of appointments the latter part of 2019 as we crammed things in before Ted went off active-duty status. Nothing major happened or changed, though we did start patching Verity's right eye for longer periods. (We started doing that in May when we noticed her left eye getting a bit lazy.) She continues to grow at her own pace, finally breaking past 20 pounds and measuring about 32 inches. We continue to work at increasing her G-tube feeds slowly.









Without a doubt, our girl is living her best life now! Lord willing, I will chronicle the details of this year's adventures here on our blog more faithfully so we can have concrete details to refer to in the future when today's memories grow fuzzy. Meanwhile...I think it's telling that I did set aside a medium which provided such needed outlet during a traumatic time--immediately after our diagnosis through the steep learning curve of the months that followed. We got caught up in the daily routines of life...in fact, we've taken our life for granted, something I swore I wouldn't do. Oh, we have had harsh reminders, to be sure. More little ones went to heaven last year--for me personally, the losses of Kace and Beckett were probably the most difficult, but it's NEVER easy reading about another child with a Trisomy condition who leaves parents, siblings, and friends behind. I always squeeze Verity tightly, even when she wants to wiggle away from me. But then more time slips past, and I lapse into the ins and outs of our busy life. Oldest daughter is getting married this summer; oldest son is graduating from high school. Our 4th child became a teenager today, and my little ones...aren't quite so little anymore.

I guess it's all I can do to cherish what I can, when I can.

Sunday, January 20, 2019

Verity's Next Big Thing

Verity's tenotomy surgery and ensuing cast (and cast removal) adventures seemed to dominate our November and December posts in her group. So not too many people know about our visits to her ENT and the sleep doctor in mid to late December, a long-awaited follow-up to the sleep study she had in September.

Immediately after her study was over--as in, that very same afternoon--we received a phone call from the nurses on duty who had read over the report by the respiratory therapist who observed Verity overnight. The study still indicated severe obstructive sleep apnea (OSA), and we were instructed to continue administering oxygen via nasal cannula at night or during naps as needed.

This was somewhat surprising news: Verity's sleep patterns seemed much improved, and she didn't exhibit any of the typical signs of OSA such as snoring. We had thought reflux was the culprit of the obstruction from months past, and with the start of the continuous feed and significant reduction of vomiting during January through the summer, we thought we were on the right track.

Interestingly, though, as we started monitoring Verity with the pulse oximeter and having oxygen at the ready, we noticed that she either had a number of nights in a row during which her saturations would be in the high 90s without oxygen, OR she would have noticeable snoring and need even more oxygen than originally recommended (only 1/32 - 1/16L). We resigned ourselves to having to wait for more information, since the "soonest" they could get us in to see her doctors was December, nearly 3 months after the sleep study! Meanwhile, we were grateful for a fairly consistent night nurse schedule as well as a friend who filled in (and still does fill in) to give Verity care and monitoring during the night. (As an aside, nowadays Verity does need oxygen almost all the time during her naps and at night. It can fluctuate between 1/32 - 1/8L, only needing more if she is fighting a respiratory illness, which, thankfully, has only happened a couple of times this season, and without a hospital stay! Verity does snore pretty substantially, fairly often, though positioning does affect this of course.)

So our first respiratory-related visit in December was with the ENT, who did a quick upper airway scope through her nose right there in the office, revealing nothing other than inflammation from reflux. (That answered my question of whether reflux was still an ongoing issue--clearly it is, even though we don't always see it coming OUT.) He did decide to put her on some nasal drops (Flonase) to help with some swelling to see if that would help (it hasn't noticeably). And then he said we would do a bronchoscopy (evaluation of the airway) to take a closer look at what is causing the obstruction.

A week later we saw the sleep clinic doctor, and she agreed with the ENT that a pulmonologist should be on board with the bronch, so together they have coordinated their schedules for the procedure, which will be while Verity is fully sedated. If the ENT sees something that can be corrected surgically (enlarged tonsils or adenoids, for example), he will do the surgery while Verity is already sedated. Meanwhile, the pulmonologist will check Verity's lungs, taking fluid samples for examination/culturing. (This is called a bronchial lavage, or lung washing. Sounds fun, eh?!)

The plan is to repeat a sleep study at least 6 weeks following the bronchoscopy to see if her OSA has improved. If it has not, then we will move toward fitting her for CPAP. Since Verity is still so tiny, the sleep doctor is reluctant to make that our first step...or rather, our next step, I guess, since we have been addressing this issue for over a year now.

These procedures and surgeries are pretty common in the Trisomy community, as our kiddos are smaller than usual but their tonsils and adenoids may continue to grow at a more "normal" rate. Still, it's always concerning when our little ones must undergo anesthesia--thankfully we have now noted CLEARLY in Verity's records that she is not to be given fentanyl!

Please pray with us for the February 5 procedure and recovery afterward. Thank you in advance!!

Tuesday, January 8, 2019

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.


Wednesday, December 19, 2018

Footloose and Fancy Free!

It's hard to believe Verity's tenotomy surgery was a month ago today! After a scary reaction to some medication, she actually did quite well recovering, and life was a lot more calm than we had anticipated it would be. Of course...we realized WHY it was so calm the morning after Thanksgiving: Verity was plotting her escape! Would you believe she managed to get her right leg entirely out of her cast! (There are more photos and details on her Facebook page, Verity's Voice...maybe try this photo link.)

After a trip to the ED for temporary splints on 23 November, she got recast on Monday when the clinic opened...this time by casting techs who knew what they were doing and made sure there was a bend at her knees! So THOSE casts worked very well for the remainder of the 22 days she had to wear them! (I know she looks so sad in this photo...she was doing amazing work with her therapist, but clearly she wasn't too happy about it, lol. Fear not, the therapist gives her a break when she needs it!)



Cast-wearing quickly became a means of working out her abs, as Verity clunked and banged her legs up and down--with the brace between her ankles (put there to keep her hips open since the tendons in her groin area were also lengthened), it was definitely a good core workout simply to move and groove the way she wanted to!

So yesterday was the long-awaited cast-removal day! In the second picture below, you can see Verity covering her face--this is her way of shutting out people or experiences she decides she doesn't want to put up with, ha! But at last she was freeeeeeee!




We've been lotioning her legs like crazy, which seems to soothe her. I don't have a great photo (yet) of her temporary plight, which involves removable splint casts to keep her feet flexed until she gets fitted with AFOs (ankle-foot orthotics) a couple days after Christmas. I'm glad I didn't take time to get her fitted for new boots...we anticipated going back to the boots and bar, but after the surgeon examined her, he said that her right foot simply will not flex all the way. He did what he could, but Verity will need a little wedge in her specially fitted AFOs to allow her to bear weight evenly.

Let that sink in...! Bear weight!! Not only will our girl sit on her own (she's awfully close now), but someday, she will stand. Walk. Maybe even run!!

Our girl has some spunk for sure! Just yesterday when she was supposed to be napping, she was practicing sit-ups instead!

We've had other appointments (finally) related to the sleep study we did at the end of September, but I will save those updates for another time. I'm so grateful to be on the other side of this cast experience, and I am loving what I see Verity doing now that her legs and hips are free! Lots of movement (no surprise that she keeps kicking off her splints), lots of rolling back and forth (even onto her belly), and a ton of progress toward sitting on her own. My dream was to have her sitting unaided by Christmas...6 more days...!!

Tuesday, November 20, 2018

Fifteen Minutes

My baby stopped breathing on her own for 15 minutes today.

Did your stomach drop when you read that? It's been 13 hours since I learned that this is how Verity reacted when she was given fentanyl during a simple, outpatient tenotomy surgery. And my stomach is still churning.

Let's back up a bit and start with the easy part: the tenotomy portion went well. Verity is sporting purple casts attached to a wooden bar. The casts are to keep her Achilles tendons flexed, and the bar is to keep the hip abductors positioned just so. Both sets of tendons underwent this lengthening procedure. Verity will wear the casts/bar for 4 weeks. (Note to self: Call to schedule the cast-removal appointment. My brain could not handle making that phone call today.)


I knew Verity would be completely under anesthesia for this surgery. She has been under twice before (once for her g-tube placement and once for a sedated hearing test), and both times she had zero issues.

What I did NOT know was that fentanyl was part of today's protocol. I had asked upon arrival what the pain management plan was, and a couple different nurses assured me the doctor would go over that with me. It was about 45 minutes between when I asked and when it was surgery time. They allowed me to carry Verity to the operating room and be with her while she went under, and then someone whisked me away. Honestly, I totally forgot to pursue the medication question...(trust me, I've carried the weight of guilt because of my memory lapse)...I had realized that Verity's feeding pump and supplies had fallen out of her diaper bag, and I was anxious to grab them and return before they called me back.

It probably took me about 15 minutes to retrieve those supplies from my vehicle...15 minutes during which I had NO IDEA an anesthesiologist was doing the work of breathing for my daughter.

I had hardly sat down in the surgical waiting area when it was all over: an attendant walked me to the post-op room, where I found a very sound asleep Verity and got the run-down from the post-op nurse.

I did not hear about the fentanyl.

We waited and watched Verity. Her sats and heart rate were good, respirations were low (10-11), but that was to be expected, they said.

Verity slept. And slept. And slept.

The anesthesiologist came by to check on her. He said nothing about the incident. Nothing at all about the fact that my baby had stopped breathing while under his care.

Verity continued to sleep.

The surgeon came by to check on her. He said nothing about the incident. He did say he only recommended ibuprofen for the pain.

Verity continued to sleep. And as the two-hour mark approached and she was still sleeping, we tried some creative measures to wake her up. We got close...and then she would go right back to sleep. I wondered if I should be getting worried, but her color was good and by this time she no longer even needed the blow-by oxygen.

The post-op nurse has 40 years of nursing experience, and she was pretty calm. But I think by this point she was getting a little concerned herself. The nurse talked out loud as if reassuring us both that it wasn't too surprising that it was taking longer for Verity to wake up...after all, she's definitely a "lightweight." After all, it was only a little bit of fentanyl that made her stop breathing for 15 minutes.

WHAT?!

I have learned I am not very quick on my feet when things like this happen. It really took me all afternoon to process all of this: I wasn't told my daughter--my almost-21-month-old, 17-pound daughter with special needs--would be given fentanyl, a drug that has killed children in the Trisomy community. Furthermore, the doctors who had my daughter in their care...literally held her life in their hands...did not tell me that she stopped breathing for 15 minutes. The only reason I learned this happened was because the post-op nurse made a passing comment. I had spent nearly 2 hours with her and even SHE did not mention this staggeringly important detail!

Am I crazy to think this is a rather vital detail to be left out of the post-op narrative?!

I have contacted our PCM and received a reply from his nurse right away--she wants me to call the patient advocate at the hospital to get it documented and request a call back from the provider. I do wish I had been able to say something while I was there in person...I think I was so stunned, and then I also needed reassurance that it was in fact all right for me to take Verity home after all this had happened. She did wake up more or less "for good" about 3 hours after surgery, and we have monitored her all day and she has done better than expected, actually. I anticipated a rough few days and nights...she napped well this afternoon, and though the evening was a bit difficult, she is resting well now with her pulse oximeter on and nasal cannula in place.

But let the records show...fentanyl will NOT be given to Verity AGAIN!!!

Thank you, Heavenly Father, for protecting our precious girl today. May she (and we) ever glorify you no matter what...