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.

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.