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

A Year of Firsts

It's been quite a year. Though we've experienced many firsts in our years of parenting, our adventure with Verity has found us swinging between typical baby firsts on the one hand and...on the other hand...utterly foreign firsts which have somehow turned into our new normal. And while we have yet to see Verity reach certain milestones that our other babies may have reached or even surpassed by their first birthdays, the fact remains: we cherish and treasure each FIRST from this past year.

The first time we saw our tiny babe and heard her little cry...

The first time one of our babies went from birthing room to NICU...

The first moment her brothers and sisters met Verity...

Our first experience with a feeding tube...

Our first night at home with a myriad of cords and machines...

Our first trip with Verity to the ER...

Verity's first church service (which also happened to be her dedication)...

Her first casts...

Her first Easter...

Her first surgery...

Her first GI tests...

Her first boots and bar (soon followed by her first therapy sessions)...

Her first smiles (at 4 months old)...

Her first Fourth of July...

Her first move...

Her first Thanksgiving...

Her first sleep study...

Her first Christmas...

Her first New Year...

Her first Valentine's Day...

And soon...very soon...on February 28, her very first birthday...

Verity, you are the FIRST baby we have had the privilege of experiencing such a roller coaster of a first year with! You have taught us so much, sweet girl. I know I'm not the first person to say this, but you have touched more lives in your short time on earth than you can ever know. We will treasure each and every FIRST the Lord our God gives us with you.

We love because He first loved us...1 John 4:19.

Living the IF

A year ago I felt the weight of my heavy pregnant body a little bit less than the weight of the uncertainty and dread that had been pressing on me ever since Verity's prenatal diagnosis. As much as I tried to be hopeful and faith-full, the unknown stole so much joy from those final weeks of waiting for the arrival of our sweet baby, a precious little girl whose very existence brought more ambiguity than any other anticipated event of our lives.

At the same time, I couldn't help but be grateful that we did receive Verity's diagnosis early, even though a prenatal diagnosis can sometimes actually be detrimental. The last few months of my pregnancy allowed me to research and prepare myself and my family for some of those "What ifs" that lay ahead of us:

What IF our baby actually lives instead of dies?
What IF we bring her home from the hospital?
What IF we go from parenting 8 healthy kids to adding one more...with special needs?

What in the world would that look like??

Well...what does our life look like now?! Because we are living the IF.

Our baby IS alive. We DID bring her home from the hospital. We now have NINE children...and yes, one of them has special needs!

So what does our life look like?

It looks like bottles and pump parts in and around the sink, waiting to be washed or drip drying on the rack.
It looks like once-unfamiliar equipment (feeding pump, pulse oximeter, suction machine) being part of daily life.
It looks like an impressive binder and filing system to hold never-ending medical paperwork.
It looks like therapy sessions twice a week and specialty appointments several times a month.
It looks like parents falling asleep in the middle of meetings and movies.
It looks like brothers and sisters coming and going, kissing Verity, playing with her, singing to her.
It looks like jumping up and down when Verity gains a few ounces or reaches for a toy.
It looks like cuddle sessions instead of the "shoulds:" I "should" be cleaning; I "should" be working; I "should" be prepping dinner.

It looks like love
and laughter
and living in the moment
and appreciating the little things.

And yes...sometimes it looks like tears
and tantrums
and turmoil
and terrifying moments.

I can't lie: this isn't an easy life. It's not what we would have chosen. But it IS what we choose now, over and over, day after day. "Living the if" has changed our lives for the better. "Living the if" means living in the grace and strength of a God who created Verity perfectly, whose plans and purposes reach far beyond our comfort zone. "Living the if" keeps us humbly walking in the path of Christ, who allowed Himself to be broken and poured out on our behalf.

I suppose it wouldn't be entirely honest to close there, because, as you might imagine, our present day reality doesn't mean that we don't still live with a different set of "What ifs." And the truth is, I still wrestle with the reality that "Living the IF" for our family means something entirely different than many other Trisomy families have experienced. But...for now...I choose to focus on the celebration of life in this, Verity's birthday month, and instead will save that topic for another day.

Random Tidbits

So much happening these days!

* Verity is 11 MONTHS OLD! That means we are on a huge countdown to her first birthday and party! Her actual birthday is February 28, but we will celebrate with an open-house-style party on March 3. Yikes! Only 4 weeks to plan this extremely special birthday celebration!

* We missed our nurse Margie this past week but are happy for her to get a work-from-home job. She did agree to come help us out now and then so Ted and I can sneak away for a date afternoon. (Dates are extremely hard to come by these days...)

* An LPN came Wednesday and Thursday to help fill in since her kiddo was in the hospital. She was very sweet and adored playing with Verity. So we did get some schoolwork done after all.

* We interviewed a new nurse who will start full time on Monday. It seems like a good set-up...praying that all goes well as we transition next week. Margie set the bar high!!!

* We also interviewed a night nurse who will start NEXT weekend working Sunday and Monday nights. Two nights of sleep IN A ROW!! I love this lady and am so excited to have her help with Verity. She is someone who is a kindred spirit to me in many, many ways.

* Verity is reaching for toys and rolling, not completely all the way, but definitely rolling back and forth and has managed to roll from tummy to side several times. (We usually have to position her arms for her to do this.)

* Nights continue to be difficult, although we had a "good" night Tuesday, only waking 3 times.

* Verity is growing like a weed! Some of her pants/jammies are getting too short! We haven't weighed or measured her since January 22, but at that point she was 13 pounds, 4.1 ounces and 62 cm long (just over 2 feet).

* Pretty sure she is teething, although we've said that for a few months now. She doesn't yet have any teeth, but this past week she has been a drool monster and loves having her gums rubbed! I don't know that she's really been any more fussy than usual, though.

* We are making gains with her head control, and with her body growth has come a sturdiness that wasn't there before. Her once tightly clenched fists are so much looser, but she still holds her hands in the fisted position, though her fingers do wiggle quite a bit.

* Here you can see Verity sitting in Rhema's high chair like a big girl! She can't tolerate this for TOO long yet, but it's so fun to have her UP close to us at the table instead of down in her seat on the floor!

* This is a Squiggle Mat, a special needs item that our secondary insurance will cover. It will take up to 2 months to actually get it, but Verity will be able to use it for quite some time. The in-home therapist and equipment specialist brought it in last week to see if it was something that would work for us. And the answer is definitely YES!

* All in all, I think you can see that this little girl is most certainly compatible with LIFE! We are in awe at how far we have come over the last year. It has been, undoubtedly, the hardest year of our lives, but here we are, caring for a baby who had a 10% chance of reaching her first birthday. Stay tuned for more posts as we continue the countdown to ONE YEAR OLD!

Genetics Appointment

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

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

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

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

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

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