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.

Photos of Post-Birth Assessments & NICU

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.

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

Of Healing and Miracles

I’m learning that faith in the fire isn’t easily defined. We can say we believe something, have Scripture to prove our points, and then find ourselves being tossed by the waves of circumstances beyond our previous realm of experience. All we can do is keep our heads above water, gulp enough air for breathing, and trust that the faith nurtured by the Holy Spirit is enough to keep us buoyant until the seas grow calm.

The “air” I’m inhaling, then, is the truth I KNOW, the foundation I don’t even have to think about.

God is real.

God is love.

God is all-powerful.

God is eternal and ever-present.

Let’s add a life vest—other truths that are buckled tightly around me and keep me from flailing and slipping underwater when I grow weary.

God has saved me through Jesus Christ and will never let me go.

God is sovereign; God is good; God has eternal purposes beyond what I can see.

God’s ways are higher than my ways, His thoughts higher than my thoughts.

This part is easy. These things I know. What I do NOT know is how, exactly, God will wield His power and work His purposes in particular situations.

God is all-powerful: so can God do miracles? Of course—Jesus used miracles to prove His claim that He is the Son of God.

God is eternal: so does He do miracles in these days when Jesus Christ doesn’t walk in a physical body on earth? Undoubtedly—many of us can testify to supernatural works that can only be attributed to the intervening hand of the Lord.

God is sovereign: so does God bring healing that overrides a doctor’s diagnosis? Sure, sometimes…I don’t have proof of this, but I suspect God really gets a kick out of showing up and showing off when people predict doom and gloom. I think He takes delight in doing the unexpected in order to get someone’s attention and draw them to Himself. (Come on…a donkey speaking to Balaam? A boy defeating a giant with a slingshot? A Jewish girl chosen as queen of Persia who just happens to save her people from mass slaughter? I could go on...)

So yes, I know these things. I believe God is powerful. I believe that if He wanted to, God could “heal” Verity.

Let me tell you what I don’t know. I don’t know what to say—how to respond—to kindhearted, well-meaning, faith-filled, encouraging proclamations about how people are praying for healing for Baby Verity, praying for nothing less than a miracle.

The night we got confirmation that Verity has full Trisomy 18 (as opposed to partial or “mosaic” T18), we talked with our older four kids about what all this means. Our 13-year-old son asked if God could heal Verity—heal her in the sense of making her “normal.”

I answered carefully. “CAN God heal her? Of course. He COULD. He is able. But in order to make her NOT have this condition, He would have to reverse what He has already set in motion. Verity has an extra 18^th chromosome in every single cell of her body, and unless He chooses to intervene in miraculous ways, that extra chromosome is always going to be there.”

What I didn’t want then (or now, truthfully)? False hope. A hope that rests on Verity somehow becoming “normal,” all because we hope and pray for healing and wait expectantly for a miracle. And so that night, I gently squashed the idea of praying for Verity’s healing, mostly because I myself feel that God’s purposes for Verity’s life are not of the miraculous, physical-healing kind.

I will say, however…after a few weeks of wrestling over various thoughts and emotions, God gently showed me that He WILL bring healing for Verity—she will be healed and made whole in heaven, if not here on earth. And so I had another talk with our family, this time telling them that I was sorry if I had discouraged them from praying healing prayers for their baby sister. I still think that “healing” can mean different things to different people, and I still emphasize that heaven is our real home, and THAT is where all things will be restored and renewed. So our prayers for healing WILL be answered, ultimately. And if they keep these things in mind…if they aren’t expecting a “healing” or a “miracle” to look a certain way…if they are open to God’s answer being perfect, no matter what it looks like…then, children—friends—by all means, pray for healing!

Am I wrong to put these mental limits, all these caveats, on our prayers—especially the prayers of other people?

It’s an honest question.

If someone feels led to pray for Verity’s full, restorative healing—who am I to stop that? Pray. Pray as you feel led. But I need to share where God has led ME, and that is to a peace that whatever happens, God has ALREADY done miracles. (Verity is already knit together and growing in my womb, fearfully and wonderfully made, just as she is.) God has ALREADY answered prayers. And I fully expect that He will continue to answer prayers and do miracles.

But…my miracle may not be as glorious as you envision.

My miracle may be bravely enduring labor knowing I will give birth to a stillborn baby.

My miracle may be that I have strength each day to care for a special-needs child with love and compassion, a thought that both drains and terrifies me.

My miracle may be losing our girl to the arms of Jesus just as we have finally learned to “do life” with her and all her needs, nurses, and equipment.

My miracle may be praising God and embracing the life He has given me when I would rather curl up and die.

You know what? On second thought…pray for miracles. Please…pray for miracles.