Weathering Verity's First Real Sickness

March was a busy month for Verity! In between her big birthday party and getting her first car, we had an emergency trip to the hospital along with a brief (30-hour) stay in the pediatric unit. The week leading up to Verity's party, a few of our kiddos had been sick with some kind of respiratory junk, the first time in a long time we've really battled anything other than minor sniffles. Thanks to our wellness regimen, we were able to contain things pretty well--the kids who did get sick were better within a couple of days, and we managed to keep them as far away from Verity as possible. I had every diffuser in the house kept busy disseminating our essential oils into the air, and we oiled everyone's feet at night and drank a lot of Thieves tea! It seemed that Verity, Rhema, and I were going to escape unscathed.

But alas, in the end Verity did succumb. Frankly, I'm amazed that she was the last to get sick! Her immune system does not seem fragile at all! But of course it hit over the weekend...our nurse warned us on Friday that she suspected something was coming on, and sure enough, Saturday morning Verity was just not herself. She had a low grade fever Sunday afternoon, and we decided to put her oxygen on for a bit of support. We were hopeful that we could ride it all out at home.

But Sunday night things took a turn for the worse. We were so grateful that we had a nurse on duty overnight! She worked with our oxygen tanks as needed but our supply wasn't enough (we only have 2 tiny tanks because we were prescribed a minimal amount--which we aren't even currently using--to help with OSA). We learned later that one of our valves was faulty, so we had an empty tank we thought was full.

Anyway--by 4am we were making plans to take Verity to the hospital, but before I could collect my thoughts and my things, our nurse told me I needed to call 911 instead. Verity was non-responsive and turning dusky. The EMS team arrived quickly and gave Verity a nebulizer treatment and more oxygen before we strapped her into her car seat and secured that into the ambulance. I rode along with her, and it was obvious that the treatment had helped significantly--she simply sat quietly, looking around!

They never did any testing to find out what respiratory thing she was fighting, but whatever it was, it didn't knock her out too long. We were admitted to the hospital and stayed overnight. Verity slept almost the whole time we were there. We knew she wasn't feeling well because she never fought her cannula! The next morning, though, she was doing well on minimal oxygen (she was only at 1/4L after arriving anyway), so we were discharged with more tanks from our medical supply company and orders to keep her on 1/8L probably for "a couple of weeks."

Three days later, we followed up with her PCM, and after a half-hour trial, we were able to ditch the oxygen! Of course she was heavily monitored, but praise the Lord we never did have to give it to her again. And a follow-up with her pulmonologist a week after that also gave good news--she doesn't think Verity needs to be followed, as her lungs are (and always have been) so clear. However, we did put another follow-up appointment on the schedule just in case the sleep clinic (scheduled for the end of May) doctor decides that Verity should be seen by pulmonology again.

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.

Go, Baby, Go!

Verity and about a dozen other kids in our area got to participate in a neat program for special needs kids who particularly need help with mobility. The Resource Exchange (the program through which we get our weekly at-home therapy sessions) partnered with area sponsors and volunteers to provide little cars for the kids. (Almost 16-year-old Tobin lamented that Verity got a car before him, lol.)

Our family arrived at the event center at a local mall to get Verity fitted for her car. She was by far the smallest participant, so she needed a lot more modifications, which unfortunately meant that she wasn't able to participate in the grand parade at the end of the morning's efforts. But, we have a car! And while it may need a few tweaks, overall it seems to work for her, and we look forward to taking her out in it when the weather is nice and we have enough people available to make sure it's safe!

To see a video of Verity "driving" her car (she pushed the button to make it start!), you can go here!

Look! It's Trisomy 18 BLUE!
Perfect, since March was Trisomy Awareness Month!

The initial assessment: how can we keep her
seated safely?

See the big red button?!
That's what she pushes to make it go!

Lots of people brainstorming ideas for the best way
to make this work for Verity

Taking a break to be silly with Daddy

Birthday Bliss

Where does the time go?! It's been over a month since we had Verity's birthday party (theme: "Joy comes in the morning"), but I still smile in delight when I think about that special day. Out-of-town guests included my parents and two dear friends who flew to Colorado to spend some time with us and help prepare for the part. On party day, the weather was beautiful--sunny and warm--and we welcomed dozens of friends and loved ones who chose to spend part of their weekend celebrating this milestone with us. It was so precious to visit with everyone and to testify to God's faithfulness in this journey. 

We don't have any way of knowing how many more birthdays we will be able to celebrate with Verity, but somehow, now that we've passed the One Year Milestone, it seems as if we've let out a collective sigh of relief. We don't take for granted the time we have with her, but neither are we anxious about impending doom, a feeling that weighed us down for much of the past year. We know with Trisomy 18 we will never be completely free of a hovering "what if," but Lord willing, we are learning to treasure the moments we do have--not only with Verity, but with each of our children, for we know that our lives are but a mist in light of eternity. May we rise each morning with joy in our hearts no matter the circumstances.

It's a One-derful Life

And just like that, Verity is ONE year old! The days (and nights) were long, but this last year really did seem to go by in a whirlwind.

After a whopping ONE hour of snoozing tonight, I gave up and brought my fussy girl downstairs so my hubby can sleep alone in our comfy bed. (He had Verity starting around 2:30am last night.) As I snuggled her on my shoulder, I marveled at how solid she feels now, all 13 pounds, 14 ounces of her. I am thankful for how she holds her head up so well I don't have to support her neck with my other hand (which makes carrying the feeding pump on a pole that much easier). I am thankful that her feedings are manageable and no longer causing her to vomit multiple times a day. I am thankful that on the whole, she is a fairly content, happy baby--something I honestly did not think we would be able to say when we were struggling to keep food in her belly and sleep longer than 45 minutes (or less) at a time.

We really have come a long way.

A snapshot of Verity at ONE year, ONE week, and ONE day:

• 13 pounds, 14 ounces
• 25 inches long
• Fed via g-tube 24 hours a day, soon to be a ratio of 1/2 breast milk and 1/2 Nourish (an organic, whole foods formula)
• Starting to try purees--we are not having luck with liquids, but two days of smushed avocado on a spoon have been a decent start to oral feeds! I have no assumptions or expectations, only excitement and gratitude.
• Rolls from back to sides and sometimes from tummy to sides
• Reaches for toys
• Tracks people and toys visually
• Loves bright lights
• Smiles and chortles
• Does silly things with her mouth: blows raspberries, sucks in bottom lip, etc.
• Loves her pacifier and holds it herself with her hands (still has a weak suck)
• Is not on oxygen at night...long story, but bottom line is we value sleep, and we think the reflux had much to do with the obstructive apnea. Waiting for another sleep study...meanwhile, the pulse ox assures us that her sats are great.
• Has physical and occupational therapy sessions once a week at home.
• Gets her workout from her day nurse, who faithfully helps Verity stretch and use her muscles throughout the day.
• Has a night nurse Sunday and Monday nights for 8-hour shifts. (Yay, sleep for Mom and Dad!)

I'm sure there are other highlights I should list, but it is nearly ONE in the morning, and since Verity has drifted off to sleep, I am going to lie down next to her on the couch and see if I can get some rest myself!

Book Project

**Update**
I am so thrilled that we have mailed books for FREE to 15 Trisomy families so far. I now have a waiting list of families who would love a copy.

Looking for people who want to be a double blessing! Our family would like to attend the SOFT (Support Organization for Trisomy) conference this summer. I’ve been pondering ways to raise money to help cover the conference fees and have an idea that could benefit lots of other people as well! Last year I wrote a book to help Verity’s siblings prepare for her arrival—the arrival of a baby sister who was different. An artist friend beautifully illustrated my text and helped me put together a professional, finished product. When someone purchases a book, I receive a small royalty that we are setting aside to help pay for the conference. I realize that many of my friends and family are not directly touched by a Trisomy situation…thus the dilemma of spreading the word to ask people to order a book.

HOWEVER! There are many folks who WOULD be blessed and encouraged by this book! Here are some ideas…
• Order books to be given for free to families with a Trisomy 13/18 diagnosis. (You can have them shipped to me and I’ll cover postage to mail to families who join the Trisomy Facebook group. I will also take some to the SOFT conference to hand out.)
• Donate copies to a local crisis pregnancy center. (You can write a personal message inside for extra impact!)
• Donate copies to your local library.
• Donate copies to hospital resource centers, genetic counselors, palliative care teams, NICUs, etc.

Books are $15 and can be ordered at the following links:
Boy version
Girl version

Would you help in some way? Even if you aren’t able to order any books to give away, would you please share this post and spread the word? Please pm me with questions or to ask for my address if you’d like to have books shipped to me.

I would love to see many families blessed with the truths that are shared in this book…our babies may be different, but they are loved, special, created in God’s image with a purpose. Thank you in advance for helping to bring truth and peace (“Verity Irene!”) to others!

Verity: Latin, meaning "truth"
Irene: Greek, meaning "peace"

The Other Side of the Coin

Tomorrow is Verity’s first birthday! Tomorrow we celebrate having her with us for a whole year. Other first birthdays have come and gone, but this one—pardon the pun—takes the cake! When we learned Verity’s diagnosis, I thought I would be planning for a funeral. Never did it cross my mind in the weeks following that awful phone call that maybe, just maybe, we would someday be printing invitations and buying streamers and looking at cake ideas for her first birthday party.

There is another side to this coin, however, and I want to share a quick glimpse at the life of another Trisomy 18 girl named Nori. Here she is—isn’t she a doll?

Verity and Nori are birthday buddies! Both girls will turn 1 tomorrow! I’ve only recently begun to get to know Nori’s sweet mama, who lives over a thousand miles away. And though our daughters share a birthday and the same diagnosis, their stories are so incredibly different.

Verity spent 18 days in the NICU. Nori is still waiting to go home!

Verity has had 2 surgeries (tenotomy and g-tube). Nori has had 4, including open heart surgery.

Verity’s biggest problems seem to be GI related. Nori has a trach, has endured chemo, and is now cancer free! (I know, right?! She is INCREDIBLE!)

Two Trisomy 18 families; two very different stories. I am so thankful that sweet Nori is doing all right (although suffering some minor setbacks that keep delaying her from going HOME), but there is no denying that she, her parents, and her siblings have had a much more difficult road than we have traveled with Verity. (To read more, please see the fundraiser page a friend has set up for them.)

But…both girls are alive. They’ve beaten so many odds, and they will celebrate a huge milestone tomorrow.

And that—that is really the other side of the Trisomy 18 coin, the fact that we celebrate what so many cannot.

I can’t deny that as excited as I am to sing “Happy Birthday” to Verity tomorrow (and again at her party on Saturday), there is a tinge of sadness that I just can’t shake. I now know too many mamas who will never get to wish their babes a happy first birthday—or perhaps even another birthday. I know too many mamas who didn’t even get to meet their little ones alive. I ache for the parents who aren't sure if they really made the right decisions, for the siblings who don’t understand why they can’t kiss baby brother or sister one more time.

And honestly? I don't understand it either. Why do our babies live and others don't? 

Sometimes we hear well-intentioned sentiments. 

"She is so loved! That's why she's doing so well." But...other children were (and still are) loved.

"So many people have been praying!" Well, I'm sure people prayed for the children who passed, too. (I myself have prayed fervently for little ones who didn't make it.)

"God has special plans for this girl." Yes, just like He has plans for all children...but some plans clearly include welcoming little ones to heaven before their parents.

Do you see the dilemma? On the one hand, so much to be thankful for, so much joy and hope. On the other hand, such sorrow as I cannot—simply cannot—wrap my head around, for I have not (yet) been called upon to walk that road. (Jesus, be merciful...help me whenever that time must come.)

I suppose that in a sense, I am still living in a cloud of uncertainty much like during the pregnancy with Verity. Tomorrow isn't guaranteed for any of us. Yet with 364 days behind us, life with our little girl is, quite simply, Today. 

Today...I will take care of you as best as I know how.

Today...I will hold you close.

Today...I will thank God for the gift of you.

Today...I will love you with all that I am.

For everything there is a season, and a time for every matter under heaven...Ecclesiastes 3:1

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:24