March 26, 2017

Is There a Rainbow After the Storm?

rainbow baby posterior urethral valve puv ultrasound 14 weeks blog postThis post is part one to about our rainbow baby high risk pregnancy (4th pregnancy)- read part 2 here. Read part one here. Read about my 3rd pregnancy that ended in miscarriage and my second pregnancy that was a Down syndrome diagnosis

It was right after Thanksgiving when my brother-in-law and sister-in-law called to announce they were pregnant. We were ecstatic for them. There’s nothing more exciting than a first baby. And that’s when I knew—I was pregnant, too.

I’ve never tested that early, but there they were, two pink lines. And right on time.

One of the hardest things about my miscarriage was the timing. We were hoping to have our third child only two grades apart from our son Anderson, who has Down syndrome. That way Anderson would always have a sibling in high school and possibly middle school, as well.

That was the plan; that was the dream. And it was crushed when we saw a baby with no heartbeat at our first ultrasound.

After waiting the time our doctor recommended to start trying again, we had only one chance to keep that dream alive. And for some reason, God showed us grace and said ‘yes.’

It appears we have a rainbow baby, another boy, who is expected to arrive in early August. 

After two ultrasounds and getting the call that no genetic anomalies were found on the latest genetic screen, I let myself breathe. I let my guard down. We told our close friends and even broke the news to our children that they were getting a baby brother.

I was thankful for God’s mercy, thankful for an uneventful pregnancy; my insides practically burst with gratitude.

I was going to write about it and I decided to wait for our 14-week checkup. No heartbeat on the Doppler. They took me back to the ultrasound room; I immediately saw the heartbeat and breathed a sigh of relief. But I noticed the tech quickly put up her equipment. They sent me back to a room and I paced because I knew something was off.

I had been here before.

They once again took me back to the ultrasound room and I noticed the baby’s belly looked like it had big ball inside. The doctor said the ball was likely a fluid filled cyst and could indicate a number of issues. He told me to come back in two weeks.

I cried, I pleaded.

Before any of this happened I had never prayed for one of my children as much as I have prayed over this new son. I prayed he would be gentle, yet strong, a defender of his brother, a friend to his sister and a man of integrity.

And here I am now, praying he survives.

It was hard losing a baby at nine weeks. The thought of losing a baby in my second or third trimester seems unbearable.

I don’t know what the future holds. I know that he has fluid in his abdomen and that I’m now at a higher chance of miscarriage. I know that it may go away, or it may require surgery or surgeries.

I thought this post would be about the sun somehow shining brighter after the storm. But if this storm turns into a catastrophic event, I don’t know if I will ever see the sunshine the same way. How many times can a person break, before the pieces are so chiseled down that they simply won’t hold together again?

I want to offer you hope in tomorrow, the promise of a rainbow, but for the fourth time in two years, I’m clinging to the side of a lifeboat; unsure if I can once again survive the rough seas.

 

*When I wrote this, we were 14 weeks along. At the time of this posting, I am 20 weeks. We have updated information. We are in a better (not perfect) more hopeful place. The point of writing this article is not to keep you in suspense, but to document this journey for others and myself.

 

 

 

April 2, 2017

Another Waiting Period

waiting amniocentesis results puv amnio callThis post is part two to about my high risk 4th pregnancy and is about waiting for amniocentesis results. Read part one here. Read about my 3rd pregnancy that ended in miscarriage and my second pregnancy that was a Down syndrome diagnosis

 

It was Friday and I had a project due. I went to the Starbucks around the corner, opened up my laptop and stared. People tell you, “Just breathe” when stress starts to pile up. I had never found that to be a hard task until that day.

Inhale, Jill. Exhale, Jill. Try to enjoy that sugary cup of decaf, Jill. Focus, Jill. 

For the second time in two years, I was waiting on Amniocentesis results. They were supposed to be ready that afternoon.

You told her not to call until after 1, Jill. Just focus on the task in front of you. Inhale, exhale. Why does my chest feel so heavy?

Two weeks after discovering our new son had fluid in his abdomen, we went back for a check up. The fluid looked different this time, but it was still there. I lied on the table for more than hour looking at my son, as the doctor told us everything he saw that looked normal and everything he saw that didn’t. He talked, he theorized.

Inhale, exhale.

He said the chance of a genetic abnormality causing the fluid was high. We declined the amnio that day.

We went through the motions—gymnastics, therapy, school pick-ups, school drop-offs. For the first time in my life, I was thankful that it takes my body a while to show the proof of carrying life. I could make small talk with moms and teachers without talking about it, without talking about him.

Another week went by, another ultrasound. Another hour-long picture session of wanting to look at him, to love him, but guarding myself from falling.

The doctor theorized more—all signs indicated something severely wrong or possibly death. We knew if this was something that could be helped by fetal surgery, we had to have the amnio. We also just wanted answers.

They took the needle out, injected it into my abdomen and I couldn’t stop the tears.

I’ve been through this before, why does this hurt so much this time? Am I doing the right thing? What if he’s already weak and I’m putting him more at risk? Good, God, where are you?

I wailed on the table. I was unable to control my emotions, unable to hide the pain from my husband. Unable.

And also unwilling. Unwilling to reach out. I felt so betrayed. Why, would God allow us to walk down the road of another agonizing pregnancy?

I raised the white flag. Retreated. Like many walking a painful path, I retreated to myself.

I hid the truth from family, from friends. I had nothing to offer them.

I thought the sun was shining on us. We waited 13 weeks to share the joy of our pregnancy; how could I tell them it all turned upside down days after? I had no explanation. I had no answers. 

I felt empty. Abandoned. Confused. I felt pain. And when I couldn’t feel the pain, I felt nothing. I plastered a pleasant smile on my face. I forced giggles when playing with my kids.

How are we here again? Don’t we deserve a break?

The call never came that Friday. Small relief. We could go the weekend without staring at our phones.

Then it was Monday.

Heavy chest. Inhale, exhale. Stare at the wall. Clean the house. Lie down. More staring. Breathing becoming more difficult.

No phone call.

The results must be bad. Or maybe not.

No answers, only waiting.

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April 9, 2017

A Broken Bladder, a Blessed Miracle

posterior urethral valve diagnosis blog bladder obstruction
It was the 18th week of our pregnancy and it was the big day—the anatomy scan. We already had four, one-hour long ultrasounds to look at our new son. Each one brought more questions, more grief and few answers. 

The ultrasound tech placed the warm gel on my still small belly. Deep breaths in, the squeeze of my husband’s hand and our boy up on the big screen.

She gently took us through everything she saw. She was trying to be encouraging, but the fluid in his abdomen was still there and now there was fluid around his heart. 

She showed us his bladder and pointed out the keyhole shape of it. Okay, we thought- it must be a posterior urethral valve. It was one of the theories the doctor from the week prior brought up. This week, the bladder not only held a different shape, but also had hole in it.

Oh no- something else wrong.

She finished her hour-long picture session and walked out of the room. My husband and I sat in silence waiting for the new doctor, who we were sure was about to bring us more woeful news.

The doctor made some small talk with us as she tried to feel us out on where we were with keeping the pregnancy. She then confirmed our son did in fact have a PUV. Then she started talking about his kidneys. She must have been going off of the previous week’s reports, because she started talking about bright spots. 

That’s when the ultrasound technician spoke up, “I didn’t see that.” The doctor reviewed the images and her solemn attitude started changing. She didn’t see any signs that indicated kidney damage. The ultrasound technician then prompted her to look at the bladder.

She confirmed the hole and said, “I don’t know if you’re praying people, but this hole in his bladder may be an answered prayer.” The broken bladder was protecting his kidneys.

It took a doctor to remind me of the power of prayer.

Of course I had prayed in the four-weeks leading up to this scan. I prayed angrily. I knew God could take this away from us, so why hadn’t He? Every prayer was returned with a worst ultrasound from the week before. Why would today be any different?

In my pain and pride, I started to doubt His goodness to me. I knew He was good, but between our rough Down syndrome diagnosis, an open-heart surgery, a miscarriage and now this—was He good to me?

He said “No” to so many prayers in the past and “Yes” to those close to me. Was I destined to live a painful life alongside my children? Had my writing and following some how made my family selected to endure trial after trial? Was I the cause of our suffering?

Just like our first doctor who theorized week after week, I theorized day after day. Not on the science behind our baby’s condition, but on the nature of the one who created him.

I theorized instead of leaning on Him, instead of loving Him through the storm and remembering that my circumstances do not define His love for me.

And He knew what my skeptical heart needed. If I had a different doctor, one who would never had brought up prayer being the reason for his broken bladder, I would have questioned whether this was truly a miracle. I mean, if He was the reason for healing our son—why not heal all of him?

But the hard truth is this: I will never know the answers to some of the deepest questions in my heart this side of heaven. So, I’m trading my theories in for hope. My hope is in Him.

This post is part three about my high risk 4th pregnancy that was diagnosed as a posterior urethral valve. Read part one here (discovering a problem on a 14-week ultrasound) and part two (waiting on amniocentesis results) here. Read about my 3rd pregnancy that ended in miscarriage and my second pregnancy that was a Down syndrome diagnosis

Where we are now: The amniocentesis came back negative. Since week 18, we have had three ultrasounds. The fluid in his abdomen is down and the fluid around his heart is gone. His bladder has created a “pop-off valve” of sorts, which for the time being seems to be further protecting him. If things stay the same, we will not need fetal surgery. In fact, at our 20-week scan, a different doctor said she hoped that as he grows, and his urethra grows, that his condition will improve. But she also confirmed that surgery after birth is still imminent. Another doctor at week 19, told us that there are three kinds of PUV’s- our son does not have the worst, but she said it’s unlikely he has the best case scenario because it was detected so early on the ultrasound. We are in no doubt a much better place than we were a few weeks ago, but we are also not out of the woods. Although the surgery is a simple one, there are potential complications and he is at a higher risk for kidney issues after birth or later in life. We will be seen about every 2 weeks, now. They will keep a close eye on his amniotic fluid level, which will be crucial for his lung development. I have had low amniotic fluid late in my last two pregnancies. We crave your prayers for our son.