Friday, April 6, 2018

Stories of Miracles and Hardships and Life

Back in March we went down to Houston for AL's checkups. We decided to make it a vacation of sorts, see family, and enjoy a week out of town together. In that we (me) wanted to take the kids to the Houston Rodeo. But come to find out the whole week was our own personal rodeo.

Cash's brother lives in San Antonio, and most of his extended family lives just south of there in these small Texas towns. We were able to spend a weekend watching his nieces play sports, visit with his Mamaw, and go to dinner with his aunt and a couple uncles. His Uncle Bobby used to be the sheriff down in Karnes County and loves small town politics. Uncle Bobby and I got to talking about Franklin County (my old stomping grounds in AR) and just the small town way of life. I could've sat there for days living in those memories, but Cash pried me away for our final stretch to Houston.

The Bug & Henry

Softball days

Mamaw and the youngest great-grandkids

Henry and his namesake

In Houston we had all kinds of things planned: children's museum, rodeo, zoo, train. We went to the zoo and rodeo on Tuesday, which was a blast, but the kids were acting terrible the next day. We thought they were just tired, so we stuck with dinner plans at some friends' house on Wednesday. These are old CWEI friends who were kept by Noble after the sell and transferred to Houston. We were so excited to see them, their new house, and their little man.

What's better than room service in your undies?!

The lion at the zoo got to hear some real roaring.

Not his first rodeo!

AL was acting lethargic, so she ended up just sleeping in their crib much of the evening. Henry was doing pretty good playing until he suddenly started crying. I was trying to calm him down and hold him when he threw up all over the both of us. I could've died. Our friends are super sweet, but here we were in their brand-new, 5,300 square foot, all white decor home and my kid is throwing up. I shutter. I cannot imagine them moving back to Midland now; I'm certain they will want to keep their 1 year old as far from us as possible.

The next day AL had her appointments. Instead of an ultrasound this time, she was scheduled to have video urodynamics which would measure her bladder, bladder pressure, and kidney reflux. We sat at the hospital in the medical center for an hour and a half before the doctor called and said the radiologist had canceled. I am breathing fire just typing it.

So we were told to travel out to Memorial City where the radiologist there would do a VCUG. This only measures the kidney reflux. However, we got GREAT news! Her kidney reflux had been grades 4 and 5 last year in the NICU but had lessened to grades 1 and 2 now. The reflux is no longer up to her kidneys; it stays in her ureters.

Through this her urologist decided to take her off the daily antibiotics and begin discussing closing her vesicostomy. We kept looking at each other in shock because we didn't know these were even up for discussion! The doctor also said he received a text from the radiologist saying although the VCUG doesn't measure bladder pressure, she did visibly see urine come out of the urethra only once her bladder had pressure.

This was huge. We knew she could urinate from her urethra. We've seen it ourselves. We just didn't know if it could hold urine back until enough pressure built up. With her vesicostomy plugged during the VCUG, her urethra held urine until the bladder was pumped almost full. So instead of going back into her kidneys, she peed! I have never been so proud of my kid peeing as I was that day! (And we are potty training Henry so that's a bold statement.)

Then at the nephrologist an hour later he noted that her bladder had shrunk. Let me repeat that. Her bladder had shrunk! That wasn't even supposed to ever happen. I think the exact words I had been told in the NICU were, "Her bladder will never shrink."

Despite feeling crummy much of the week, we left Houston excited and confident and Rx free. Cash and I were on such a high that we drove the entire way from Houston to Midland at 5:00 in the evening. We stopped once at Buccees because of course. And we stopped once more for gas. I think we rolled in about 2 AM. Exhausted.

When we woke up, Henry was running fever. I took him into the pediatrician. Strep.

Of freaking course. The night before we had thrown AL's meds away. That day we were going to pick up more from Walgreens. A nice 10 day supply.

On Sunday AL woke up with a fever. They finally saw her on Monday. Strep. Of freaking course. Another nice 10 day supply from Walgreens.

We finished both of their rounds of meds. About three days later AL started getting a fever. We were able to manage it pretty good with Tylenol and chalked it up to teething. But by the third day of this Tylenol could no longer sustain us. She got up from her afternoon nap blazing.

A quick call to my friend Meredith, and her husband came over to pick up Henry for the night while we took AL to the ER. I have always been so anxious for this moment. Our first ER trip. Our first big Prune Belly scare. It was finally here.

The ER staff was pretty quick for an ER. Isn't it ironic? We go to the EMERGENCY room knowing it will take a long time.

Brave & Strong

The ER got everyone to sleep
But within 3 hours they had drawn blood, taken an urine culture, done an Xray, performed a full body exam, gave her meds, diagnosed her, and discharged us. UTI. Her very first one.

On Monday I got on the phone with her pediatrician, urologist, and nephrologist. The plan of attack was set for another round of bloodwork and ultrasound in a few weeks. For now she gets to stay off the daily antibiotic, but if she gets another one she will go into surgery to close the vesicostomy.

It was Good Friday that night she was diagnosed with a UTI. As Cash and I held her down on the bed for 5 sticks to get blood, I kept thinking about sacrifice. 2,000 years ago on that very day Jesus was held in the same position. He was mocked and beaten and crucified. Yet not the cross nor death could hold him down. His ultimate sacrifice saved our eternity. It also saved our present. I could not help but think without the love of God and his miracle in AL, we wouldn't even be able to be in this moment. God did not take His own Son off the cross and save him from crucifixion. Yet He saved my child. I cannot comprehend that love.

Going through the heartwrenching yet miraculous pregnancy with AL then receiving the diagnosis of Prune Belly Syndrome has opened a new world for us. From the people we've met to the medicine we've learned, I would never take away what we've gone through to get here. I've had chances to speak and write about this miracle from God, and I've seen my own faith increase 1,000 times over.

Recently I got to talk with another mom going through a pregnancy with a PBS daughter. It absolutely crushed me when I heard they lost their daughter this week. It has brought back pain and memories that many times I try to keep hidden.

We see this miracle of AL and think anytime this platform gives us a chance to share about it, it will all be good. But this time when I was contacted about PBS, it wasn't good. My platform (if you can even call it that) was used to share our experiences and give what little wisdom we have in that arena, but for this family their world crashed and did not have our same outcome.

My mom and I were talking the other night when I told her about this family. She said, "I can't imagine what they're going through." My response was, "I can."

Every day of my life I think about that month of planning my daughter's funeral. I think back to those nights I stayed awake feeling her kick and wondering was I going to hand her back to the nurses. I could picture the delivery. I could picture holding her. I could even picture the funeral. But I could not picture handing her back to the nurses.

The last month has met us with sickness and sadness. It has also met us with miracles and hope. If nothing it has been a reminder to me to appreciate the quiet days. The days where we are just living. The days where I beg my kids to just let Mommy finish her coffee. The days where I cry because their naps didn't line up at the same time. The days where I boldly ask myself, "Do they want breakfast and lunch today? Or do I think they'd be cool with brunch?" We all know the answer. They want all 3.

Living her best life

Helping Daddy

After this month I am ready to have my own momma. Sit in her house and drink her sweet tea. As we finish up the last 50 miles of this 600 mile trip we are on, I can honestly say I've never been more ready to be home. I have longed for Franklin County more in the past 3 weeks than I have my whole married life. As I look in our backseat at the 2 tornadoes waking up from their nap, I wonder if they'll find comfort in us like I do my parents. If one day they'll drive 600 miles just for that feeling of home. If they'll say, "Remember when you took us to Houston and had it all planned out? Yeah, we just wanted to swim in the hotel pool." If they'll sit in church on Easter Sunday and the other 51 Sundays of the year and thank God for this breath, His love, and the ultimate sacrifice of His Son that gave it all to us freely.

Be blessed,

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