Friday, October 14, 2016

Our Journey Through Fetal Medicine: LUTO

Within two days we found ourselves sitting at the Regional Perinatal Center in Odessa, Texas. We were waiting to see both the specialist and a genetic counselor. By this time I had looked up our doctor and realized he was a specialist all right--he had previously been at Vanderbilt's fetal medicine program and his picture even was circulated via email several years ago for a surgery he performed in utero. I thought that was pretty cool; we pretty much had a famous doctor.

I had no idea what a genetic counselor was, but I was pretty sure we did not need a therapist so I was hoping to miss that appointment.

While waiting I started what would become a routine for us--to take a picture before every doctor's appointment. I wanted to document every step of this process. Plus, I was trying to take our mind's off of our fate. I was trying to capture the few times we could smile.


meeting the specialist for the first time

When we met our doctor, we were already in the midst of our ultrasound. He came in and took over the ultrasound. I was shocked. I had never seen the doctor do the ultrasound, but he guided it so easily.

As he was sitting down and shook our hands, he said, "Congratulations on the little boy!" We both laughed and said that we had not intended to find out the gender but now that he had told us, we thanked him. He was shocked. "You don't know the gender? We have to know the gender."

He began to explain that what our baby had was a rare condition called Lower Urinary Tract Obstruction, or LUTO. This most often is found in males, so it was presumed our baby was a boy. He wanted the blood tests we had already done to confirm that, but since we had not wanted to find out the gender this information was not included on our lab results.

The prognosis for LUTO was fair. If the baby was indeed a boy (which no one really even doubted), the doctor would draw fluid through an amniocentesis every 48 hours up to 3 times. If the kidneys showed function on that test, he would send us to Houston for a shunt to be placed in the baby's bladder that would act as a catheter until delivery. Upon delivery a minor surgery would be done to correct the blockage from the bladder. About 50% of these boys need dialysis/kidney transplants throughout life.

If the baby was a girl, it was fatal.

We tried to soak that in. It sounded pretty promising. We knew the baby would most likely be a boy. Its kidneys seemed to be functioning on ultrasound. And 50% isn't so bad--but in the big scheme of things, what is a kidney transplant? We went to church that night telling everyone to hope for a boy and that we were going to be leaving for Houston within the week.

The next morning I was about to start a new Bible study when my OB's office called. "Hey, they said you want to know the gender now."

"Yes! Please!"

"Congratulations, Avery, it's a little girl!"

"There is nothing they can do," I said as I dropped the phone.

Panicked I grabbed my stuff and got Henry from the nursery. Cash was in a meeting, and I could not get a call through to him. I finally texted "come home."

When he called me back, he was already crying. He knew. We were all in shock. How could this happen??? We had a condition less than 1% of babies get and in that 1% we have another 1% likelihood it is a girl. That isn't even real life.

I waited 5 hours to talk to someone at the perinatal center. It was only after I had screamed at the receptionist that I would not wait until the end of the day to talk to someone and hung up that the office manager called back. When I told her what was happening, she said the genetic counselor was in the NICU at the moment but our doctor would call us right back. And he did.

He told me how sorry he was about the fatal diagnosis. He wanted to do an ultrasound the next day to confirm the gender.

I called my OB's nurse back and asked her the accuracy of the blood tests. She said 99%. Cash and I agreed we had been 1%ers this whole time, so we would most likely get a different result on the ultrasound the next day.

Your mind plays lots of tricks on you when you are going through a crisis. For me I mostly felt denial. No way this was really happening. I would try to laugh with the doctors or make jokes. I could not let it sink in that we were losing our child.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:








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Our Journey Through Fetal Medicine: Things Aren't Quite Right

After I found out I was pregnant, I immediately called my OB's office to get the ball rolling. I had been breastfeeding up until a few weeks before this, so I really had no idea how far along I was. Despite my pleas, the coordinator would not let me see the doctor until she felt I was at least 8 weeks. She would not even let me schedule it. I pushed pretty hard and kept saying she did not understand and that I did not really even know how far along I was. But she took it upon herself to tell me I was not far along enough yet and I would just have to wait.

My first lesson in this journey was to trust my instincts. I knew I needed to see the doctor. I knew. But after a bit of pushback, I did not want to be that mom who makes the OB's office hate her. So I waited.

The first appointment started out pretty standard. We went in and had to pay for the entire 9 months plus delivery up front and were herded through that process quickly as they see this routine day in and day out. I love (LOVE) our OB; but I felt like no one in the front office was sharing our experience. I was already a wreck, and when no one in the front office seems to care about the miracle they experience every day, it is a bit disheartening. But I was FINALLY there, and I was going to soak up this moment and this pregnancy. And I had vowed not to complain about pregnancy so much this time around.

We went into the ultrasound room knowing fully what to expect: to see our little baby so tiny and get the rush of love that flushes over you when you see the wee one for the first time. Except this time it was different. The tech began telling us everything she was looking at and measuring and finally said, "Are you sure you are only 8 weeks?" I said absolutely not. She said, "Okay, well, honey, congratulations. You are 11 weeks."

Praise! I had been so sick and this meant I was on the downhill slide. Plus, I had just basically skipped 3 weeks of pregnancy! Woohoo!

But then she told us that she was seeing something she had never seen before and would have to get the doctor. This was not that rush of love or excitement I experienced with Henry. This wasn't what happened ever. So we sat and waited for the doctor.

That day we learned the baby had fluid in its abdomen. The OB said this could be a range of things but only time would tell. We could be seeing anything from Down Syndrome to a fluke to a coming miscarriage. I will never forget what he told us next, "I may see you in the next few weeks due to a miscarriage. Please come to us; do not go to the ER. But remember this: there are worse things than a miscarriage."

I sat stunned. Luckily Cash had come with me that morning at the last minute. I held it together until we got to the car, and I just lost it. Miscarriage?! A genetic issue?! How could this happen to our little baby? I had not even appreciated the pregnancy fully yet. I was still reeling with Baby #2 guilt. And now this--I began to feel like the worst mother in the world for having guilt for being pregnant again. I also felt hopeless.

And how is anything worse than a miscarriage? I tried to see his point. At the time I thought I did. But what the next few months would show me was that I had no idea how right he was.

Once we got home I tried to call my mom. I may have gotten out 3 words before Cash had to take over the conversation. I was a wreck. I laid in bed the entire afternoon while my husband watched Henry and checked on me throughout the day.

My emotions were everywhere. We did not have another appointment for 4 more weeks to find out more what was happening. Within a week our blood tests came back showing us at a low risk for any genetic conditions. That felt like a huge relief. In my head I kept thinking, "Okay, I can do a surgery or two. Or maybe it's a fluke." By the time 4 weeks was up I was convinced it was a total fluke.

We prayed quite a bit during this time. My husband fasted twice. People called giving their support and saying they were praying for us. The morning of the appointment we sat as a family of 3 and my husband prayed over us. You have such confidence in that. You know God is hearing you. When those 4 long weeks were finally up, we went back to the OB. I was not worried. I had prayed so hard, and I just knew a miracle was going to happen and the doctor would say, "Oh, nevermind, it was a fluke." And life would go on.

But when the tech turned on the ultrasound machine, both Cash and I knew immediately. It had not been a fluke. No miracle had been performed. Our baby's bladder was now much bigger than its entire body. Even we saw that.

The OB came in and said how sorry he was that this was happening. He could tell the fluid was in the bladder (not the stomach) and thought it looked like Prune Belly Syndrome. But he said he was not a specialist in this so he was sending us to the perinatal center where doctors were more highly trained in fetal medicine.

I had no idea what had hit us. What? I thought my OB knew everything. Specialists? Who is more specialized than my OB? Not a fluke? I was pretty sure God had heard all those prayers.

And we thought things were super optimistic because it was the bladder. I googled Prune Belly Syndrome and found it was not a good prognosis, so I dismissed that readily. Yeah, our baby has some issues but goodness gracious they aren't that bad, I thought.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:








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Our Journey Through Fetal Medicine: We're Expecting!

Today is October 14. Two weeks ago no doctor in the world would have thought I'd be sitting in my house on this day. Instead it was presumed I'd be living through every parent's worst nightmare at this very moment. But our journey to this day started several months ago. Here is where it began...

In early July my husband Cash and I were at home watching the Olympic Trials when I burst into tears for a track athlete who narrowly made the US Team after her third and final attempt. Cash looked at me and asked, "Are you pregnant?" I sure did not think so, but in my head I made a note to get a test the next day.

After Cash left for work, Henry (our then 8 month old) and I ran to Walgreens and picked up a test. I was not sold on the fact that I'd be pregnant. I had just stopped breastfeeding and knew certainly there was no way this was happening THIS fast. But once I got home it took .03 seconds for the stick to show two pink lines. I cried.

I was elated of course that Henry would be a big brother. I was also scared out of my mind and honestly mostly sad that I had not had much time with him by himself. I started getting mad at myself for not being more careful, yet my heart was already exploding with happiness as I thought of the addition to our family.

That afternoon we ran out to find a "big brother" shirt that he would wear to tell Cash we were pregnant. I quickly learned they do not make these shirts in size 6-9 months. Nope, they make those starting about 2T. I think that depressed me more knowing that even to clothes makers I should have waited another year and a half.

I saw a friend at the store and she asked what I was doing. With my tot on my hip I said, "I am a bit delusional right now. Like, literally, I just found out I was pregnant." She was ecstatic and had to reassure me that it would all be perfect and wonderful and not to fret.

Big Brother Henry

Eventually I got the 2T shirt and put it on Henry. He was asleep when his dad got home from work, but I could not stand not telling him. So I went and got H out of his crib and Cash just stared at the shirt for a minute and just said, "Wow." That's my husband's very emotional state. I had panicked all day not knowing what emotion to feel and all he came up with was a very mild "wow."

I told him he had to call his parents right then and invite them to dinner because I could not keep this a secret. After a solid 7 minutes of his mom holding Henry with his "big brother" shirt on (which felt like an eternity), she finally asked, "Are you pregnant?!" Ahhh! Yes!! I could finally talk about it.

coming March 2017

It was not long before we saw my family as well and were able to tell them. Of course everyone was thoroughly excited. All the while I still had that tinge of guilt. I think every parent does when #2 comes along--no matter how old your child is. But I remember sitting in Cash's lap some nights and just crying that I wasn't ready for Henry to not be my baby. These emotions, as real and raw and natural as they were, would ultimately haunt me and make me feel as though I was unappreciative and deserved so much of what was coming our way.


To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:









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