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

Resource Book PUBLISHED!

If you were following our journey shortly after Verity was born, you may recall the story behind the story Our Baby Will Be Different, a book I wrote to help prepare Verity's older siblings for what some of their baby sister's challenges might be. I am pleased to announce that the book is available for purchase in both a girl version AND now also a boy version! I am extremely grateful to our friend and illustrator Adam Turner for his gift of time and talent not only in illustrating both versions of the book, but also in helping me prepare the book for publishing in an on-demand format so that it can be available at any time for anyone who wants it.

This upgraded version includes a list of some Trisomy resources in the back along with space for journaling "Our Story." It would be a lovely and meaningful gift for any couple who learns their baby has Trisomy 18 or Trisomy 13.

A Day in the Life of Verity

On our family/homeschooling blog, I try every now and then to write a "Day in the Life" post capturing some of the (seemingly mundane) details of our lives during a particular season. It is always a joy for me to go back and reread those posts as the years pass. I thought it might be a good idea to do something similar here on Verity's blog.

I don't know if we EVER have any "typical" days around here...and that is something I would have said even before Verity joined our family! So, after I had snapped a few photos already today, I decided maybe it would be a good day to try...

Today I woke at 5:30am, pumped, showered, and hustled downstairs to take over Verity duty since Ted had to leave for work at 6am. Good thing I hurried, because she was waking up. Ted usually has Verity with him when he is making coffee and working in the kitchen. Last night our sweet Kenna slept on the couch next to Verity's bouncy seat so she could help soothe the baby in order for Ted and me to get a decent night of rest. (I had slept on the basement futon with Verity near me the two nights before that.) We had our bedroom door open and had told Kenna to come get us if there were ANY issues, but thankfully it was an uneventful night...though Kenna said Verity woke and wanted the pacifier about once an hour. She was pretty relieved when Ted came downstairs at 4:30 to take over so she could go to bed!

Anyway. Verity was awake and clearly ready for the day...but NOT for snuggling with Mommy, which is a bit unusual, since more often than not it seems I'm holding her while drinking coffee and attempting to read my Bible and pray without falling asleep. But today, for whatever reason, Verity wanted nothing to do with me in the morning! I finally gave up and laid her on the carpet so I could go get her bouncy seat...and the li'l stinker was as happy as could be just wiggling on the floor! (As you can see from the photo, I had set her feet free from the boots and bar for awhile.)

You can see her feeding tube...the continuous
nighttime feed goes from 9pm to 7am.

Verity was a bit high maintenance later on, but since it was daylight, I was not terribly stressed out--fuss on, sweet babe. Let's work on being awake in the daytime. She did, however, conk out with the 8am feeding...but woke up toward the end, likely because she had to poop, which resulted in most of the 8am feeding coming out her nose and mouth. Sigh. It was a mad, frantic rush to clean her up and get her ready for the day, since I had to leave with her, Charis, and Tobin for a homeschool co-op orientation by 8:40. At least she wasn't dressed for the day when the reflux happened...

Hanging out with Mom during orientation.

Verity was fairly unimpressed with our big morning. I had left Arden in charge of our other younger kiddos, letting Kenna sleep in as much as possible. The kids had a great time from what I hear; I wrote various activities on slips of paper and folded them up so they could choose papers and follow instructions, things like "play hide and seek," "eat a cheese stick," "count by 10s to 100," "build a domino train," etc. It kept them busy until we got home at about noon! Meanwhile, though, we were attending the new family orientation, followed by a tour of the facilities, followed by a whole co-op family orientation, followed by meeting the teachers/paying class fees/etc. A terribly exciting morning, as you can see by Verity's expression below.

I was thankful Verity finally fell asleep and stayed
asleep for most of the speakers!

Verity pretty much slept from about 10:15 until maybe 1pm? She did wake up a bit when we got her resettled in the car seat, but she promptly fell asleep again. It was helpful, though, as I needed to pump and do the lunchtime thing with everyone when we got home.

The 2:00 feeding saw some success with the bottle!
5ml! This is amazing since she hasn't done very
well at all with oral feeds since we moved.

Verity happily did some tummy time on the floor while I put Rhema to bed for a nap (or perhaps Verity just wasn't terribly awake yet), and then we had a wonderful feeding time. She was so alert and happy! (That's what happens when you get a good nap, Verity!!!) Not too long after, though, she started to get fussy. I took her to the changing table; not only does Verity prefer clean, dry diapers, but she also really, REALLY likes lying on this changing table. She looks up at the wall--we think perhaps she likes the contrast of that black frame against the white wall, but it is a consistent thing that she gets very still and quiet when we change her. I wish we could leave her here safely, lol.

There's a reason we posted this verse here!
Special thanks to Uncle Joel and Aunt Sarah
for this sweet gift!

After being gone all morning, I was a pretty popular figure with Zaden and Seanin, who begged me to continue with the activities on the paper slips. So we blew bubbles on the deck (after a minor skirmish opening the bubble containers...who seals those anyway?!) until Verity decided that she had had ENOUGH of that. I worked hard to console her...

She was not pleased with being on my shoulder...

In fact, she wasn't pleased with much of anything.

After trying various things, I put her in the swing.
She was not terribly impressed...however, after
awhile, she did indeed fall asleep!

Hooray! Some quiet time to read together! 

I made myself some iced coffee since it was clear I was not going to get a nap in the afternoon. After Zaden and I took turns reading pages in this wonderful (long) book, I told the boys I needed to work in my office. Verity slept on in the swing while I finalized our Sonlight Curriculum order for homeschool supplies for this coming school year. Yes, I'm a bit late...but we now live in the same state, and anyway, we wouldn't have been ready to start any schoolwork before now anyway!

Believe it or not, Verity slept and slept and slept and was still sleeping through her 5pm feeding! This actually was helpful, since I worked in my office until after 4:30 and dinner required quite a bit of prep. Charis and Tobin helped me start paprikash potatoes while Arden got Rhema up from her nap and kept her (mostly) out of the kitchen. Seanin really wanted to help, so I found jobs to keep his 4-year-old self busy. Verity woke after her feeding and was awake most of the evening, getting rather fussy after dinner while Ted was bathing the littles.

This is the last photo I took today...she's on our bed at about 7pm, grunting while holding in her pacifier. The amazing thing is that she's still wearing the same outfit I put on her at 8:30am! Thankfully no more reflux episodes! Of course...she's been down at 65ml per feeding...so, I guess I have mixed feelings about that. Sigh.

So, there you have it...a more or less "typical" day with our little princess. Not pictured? Valiant efforts on behalf of every single sibling to soothe Verity during her fussy times. I wish I could have captured THOSE moments on camera, but I will never forget looking over and seeing a big brother or sister gently giving Verity her pacifier, stroking her fuzzy head, patting her tummy, or other sweet gestures. Our girl may be fussy and unhappy much of the time, but she is well loved...and honestly, I think she knows that!

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.

Our Baby Will Be Different

After our T18 diagnosis, I wrote some text that I planned to read to our younger children to help them better understand and prepare for some things about Verity that would be different. I sent the text to a friend of ours, Adam Turner, who is a very gifted freelance artist to see if by chance he would be able to put together some sketches for me. He heartily agreed; however, he got very, very ill over the holidays with a severe virus that wiped him out for over a month. I didn't want to bother him, assuming he would have his own work piling up, and simply printed off my own pages and put together a little card stock booklet to read to my kiddos.

Well. The very day that Verity was born, a package arrived on our doorstep, quickly intercepted by our 16yo daughter who had received word from Adam that something was in the mail for us. Two mornings later, as we gathered our family together for a photo session, our daughter presented us with two copies (out of a total of 25) from this box that Adam ordered to be sent to us. It's my book!! I promptly burst into tears...good thing I hadn't put on my mascara for the day!

With the extra copies, I am so excited to be able to bless other families who are going through a similar journey to ours: finding themselves expecting a baby who will be "different" and trying to explain and prepare older siblings.

I offered to mail free copies while supplies lasted to families in the Trisomy Parent group, and the response has been so heartwarming. Almost all of our extra copies are spoken for, with a clamor for a "boy version" of the book--ours, of course, uses female pronouns since we knew Verity was a girl. I've contacted Adam to see if we can make this happen. I even received an offer from one of the moms to translate the text into Spanish!

As was mentioned several times, the available literature for families in these situations is extremely limited. Would you join me in praying about getting this published on a wider scale so we can bless and encourage even more families?