Bear Lake Brawl

It was a healthy pregnancy.  No complications.  No indication that the baby was in trouble.  

And on a June evening in 1984 my mom started having contractions. What started as an exciting day - full of anticipation - spiraled into a terrifying experience where my mom and little brother both nearly lost their lives. I go into detail about the experience because Michael's first moments on this earth were foreshadowing of his life to come.  He has had to fight from day one.  And my parents have been his strongest advocates.    

My father was watching the baby's heart monitor at the hospital; something wasn't right.  He repeatedly told the nurses he was concerned.  Nurses assured him nothing was wrong, and that the monitor had been malfunctioning all week. But something was wrong. The umbilical cord was wrapped tightly around my brother, Michael's neck.  Doctors didn't recognize the severity of the issue until it was almost too late.  With each contraction, the cord wound tighter, and the necessary oxygen Michael needed, was cut off.  Michael was slowly suffocating.  This went on for four hours.  Time was running out.  Mom was wheeled in for an Emergency C-Section.   

My mom says the anesthesiologist, Dr. Lind,  saved her and Michael's lives that night.  She remembers the anesthesiologist yelling, "Where is the doctor?!?" A nurse replied, "He is scrubbing up..." To that the anesthesiologist replied, 

"He doesn't have time to scrub - if he doesn't get here now, there won't be a baby!"  

Mom remembers hearing rapid footsteps - the doctor running to the table where she was strapped down. The doctor grabbed a scalpel and cut mom's stomach horizontally.  Her body lifted off the table in pain. There had been no time for anesthesia.    Within the hour, Michael was born by c-section on Father's Day -- June 17th.  

During the C-Section, the doctor cut mom's uterine artery. Unbeknown to medical officials, mom was stitched up and sent to recovery. She was bleeding internally. Dr. Lind, the anesthesiologist, recognized the problem nearly five hours later. At this point, mom had lost so much blood that her body was shutting down.  Dr. Lind frantically pushed mom's bed to the Emergency Room.  

"I need you to open your eyes, Ronda," he said. "Take a breath! Do it....breathe'" he pleaded.  
"I am so tired," Mom mumbled. "Leave me alone."  Her eyes closed.  
"No! I won't let you die. You are too young," he yelled.  
 My mom was 29-years-old. I was almost three, and my father would need her help and support to raise a special little boy who would end up shaping all of our lives for the better.  

 "Live Ronda," Dr Lind yelled. He slapped mom's face. "Wake up!!" 

An on-call surgeon performed surgery on mom, sewing up her uterine artery. The scar from the original c-section cut ultimately hindered her from ever being able to carry another baby.  

Mom didn't know if Michael had survived. She hadn't held him. The nurses hadn't said anything to her about him. In recovery again, she had a ventilator to help her breathe. Because she couldn't speak, she signaled for a pen and wrote,

 "I want to see my baby" over and over again. 

Nurses said no, because both Mom and Michael were in such serious condition. She continued to plead through writing. She finally held Michael, for the first time, four days later.  She received 28 pints of blood transfused into her body, to make up for the blood loss from the cut uterine artery.   During the blood transfusion, mom received some compromised blood; she contracted a blood disease that wasn't discovered until 13 years later. She now functions on 7 percent of her liver - she has undergone treatments that nearly took her life....and she has survived.  



Michael was in the NICU for 17 days. Physicians were very tight lipped about his diagnosis and future well being. My parents felt alone, scared and overwhelmed. Three weeks after Michael was born, a letter came in the mail. It was addressed to the Parents of Baby Boy Wiscombe. The letter informed my parents that a pediatric neurologist had examined Michael during his hospital stay. The words were cold and harsh. The neurologist urged my parents to forget - forget that Michael was born, forget that he was part of this family;

 "Put him away. Let him become a ward of the state. Forget that you had him. He will be a vegetable; deaf and blind."
  

My parents were hurt and upset. My father called the neurologist, whom they had never met. 

"First of all," he said. "This baby has a name. His name is Michael. 

And secondly, you don't throw people away like trash; you don't just give up on them and forget you had them because they're not perfect."  

Words that would be a pattern for the rest of their lives. Never giving up. Always thinking of Michael and his quality of life - first.  Michael was 15 Months old before a medical professional gave my parents an official diagnosis. He has cerebral palsy, he suffered brain damage due to the lack of oxygen during his traumatic birth. His muscle control is weak. He relies on my parents for every daily need; bathing, feeding, diaper changing, dressing and administering medications. Of course it hasn't been easy. But our family has rallied around Michael.  

Michael has changed us.  

He has made us better and more aware of what really matters in life.  

And as my only sibling, Michael has been my encouragement, support and example.  

So what a miraculous event for me to watch him take center stage; to see my brother in the spotlight.  Michael spent a majority of his childhood watching other kids play little league, soccer and run track...while he looked on from the sidelines, in his wheelchair.   The day of the Bear Lake Brawl was HIS day; his day to be the star, the athlete, the one everyone came to see.

Jody teamed up with his dad and brother.  The three of them helped Michael cross the Finish Line at the Bear Lake Brawl Triathlon 2013.  Pretty Remarkable.  

Michael was so excited, he didn't sleep the night before!  Here is the star of the show - getting ready for the race to begin.

Pre-Race with Michael's biggest fans

It was a perfect September day on Bear Lake.  Jody pulled Michael during the swim portion, while Jeff, Jody's brother, swam along side to make sure Michael was doing okay.  Michael did better than just okay - I think he was so relaxed out there on the water, that he even fell asleep for a part of the swim.  Meanwhile, Jody and Jeff were treading water like crazy!  Swimming in the lake is a challenge; it's easy to get disoriented.  And pulling a kayak, carrying a person, would be even more difficult.  But they did it, and with great speed.  Michael barely even got wet. It was so inspirational to watch Jody, Jeff and Greg help Michael swim, bike and run.  

“You have not lived today until you have done something for someone who can never repay you.”

My sister-in-law, Lacey and Father in Law, Greg
Completing the Swim Portion 

Jeff pulled Michael on the bike, while Greg followed behind to make sure everything was okay.  Michael really liked the bicycle portion of the race.

Here, some of Michael's Warriors, are acting as the maintenance crew - switching over the carrier from the bike hitch to the running mode.  Everyone acted fast to help Michael and his team get transitioned from one phase of competition to the next.

I am so proud of Jody for helping to make this dream become a reality for Michael! Months prior to the race, Jody started 'training' with Michael. He spent a number of summer evenings running or biking with Michael - Michael always got very excited when it was a

 'training day'.  

Gracie was so good to check on her uncle and make sure he was feeling okay - post race.

Some of the physicians back in 1984, didn't expect Michael to live very long - let alone a full and quality life.  He turns 30 this year.  And he now has a medal from a Triathlon under his belt - thanks to people who believe in him.  Thanks to people who don't give up on other people.  Nobody is perfect.   In Michael's case - his physical limitations, are more obvious.  But for those who know Michael, like I do, he is witty, opinionated, funny and caring; he gets hurt feelings just like me and you. He is neither deaf nor blind...he is so much more than the expectations he was given as a newborn.  

He's a hero.  He needs someone to help pull him along, someone to push him across the finish line - but don't we all, at some point?  That's why we're here on earth - to lend a hand, to be someone's legs when they can't possibly make it on their own.  



“It has been said that life has treated me harshly; and sometimes I have complained in my heart because many pleasures of human experience have been withheld from me…however, if much has been denied me, much, very much, has been given me…” 

― Helen Keller, The Open Door

The Swinging of Summer....

“What good is the warmth of summer, without the cold of winter to give it sweetness.” 
― John Steinbeck

Our summer was beautiful and memorable, and just like the playground swings that we spent so much time on...we had our highs and lows.

I knew something was wrong.  I was at Cookie Cutters, a children's haircutting salon.  I should have made an appointment, like all of the more-prepared moms.  They take walk-in's; I just didn't expect it to be booming at 9 am on a Thursday morning.  But it was.  I put Sienna's name on the list for a bang trim.  We needed to be somewhere in 45 minutes...and it was evident, we were going to be late by the time she made it into the little airplane to get her hair cut.

Sienna was finally next.  And I was anxious for her turn.  The stylist called another child's name who had walked in after us.  Oh Heavens!  You would have thought I had been shot.  I started bawling.

Bawling....people.

I knew this wasn't appropriate behavior, and my frustration as to why I couldn't get a grip, made me cry harder.  The shocked stylist realized her mistake and took Sienna back where she was placed in a mini pink car.  She asked me what we were going to do with her hair, and I could hardly answer her because I was choking back tears.

Tears. Streaming. Down. My. Face.

I caught a glimpse of myself in the mirror, and cried harder.  What was going on?!?!

I share this because maybe, just maybe, one of you moms have had a similar situation where you felt like you weren't yourself; like you had been taken over by a crazy, crying person who clearly shouldn't be in public.  OR perhaps this has never happened to you, and you can get a good chuckle out of the situation, and be thankful you've never turned into a puddle at a Children's Haircutting Salon.  

The following week, I miscarried.  I was seven weeks along.  My body had been fighting hard to create a viable pregnancy, which was evident from my above (out-of-whack hormone induced) behavior.   But there were too many factors preventing a healthy pregnancy from taking shape.

After I miscarried, I felt awful.  For two months, I couldn't shake it.  I didn't feel like myself, physically or emotionally.  I had a number of symptoms, many of which I won't share here, but I was dizzy and ill.  After weeks of symptoms, an ultrasound showed an inch-long complex cyst on my right ovary and a polyp on my uterus.  My doctor said that polyp would continue to prevent any successful pregnancy.  But the great news was we had answers.  I always feel so terrible for people who struggle with their health and never receive a diagnosis or solution for the problem.  We had a solution: surgery. The date was set, and I was excited.

As relieved as I was to have a date for surgery on the calendar, I still felt a little sorry for myself.  Disappointed and discouraged that things were taking so long.  Sad because I felt like I knew what should happen next....and it wasn't happening.  Silly, I know.  There are so many others out there, who have been dealt a much tougher hand.

I went to Macey's Grocery Store after work one night.  It was late.  I had a cart full of groceries, and as I tried to leave the store, there was a wall of people blocking the exit.  It was POURING outside.  People were waiting it out, but I was ready to get home and see my husband...so I started running.  Pushing my cart, in four-inch heels, I was drenched after two strides.  SOAKED.  I have never been so wet from a storm.  The rain was coming down so hard, I couldn't even open my eyes.  And the cart wouldn't really roll because there was so much standing water on the ground.  But I was so determined to get to my car.

I thought, "Why is it raining so hard?  I'm tired....so tired."  And then something funny happened, especially to the girl who hates to get wet when fully dressed.

I stopped.  And I started laughing.

I stopped trying to hurry through it.  Nothing I could do would stop the storm.  I was in the middle of it, and the only thing that was going to get me through it, was a change in attitude.  I was alone, the rain beating down.  And suddenly I was okay with it.  I took a deep breath in, and just embraced the moment.  It was such a drastic, eye-opening moment for me.

Days later I went in for my Pre-Operation Visit.  They did another ultrasound.  And to the technician and doctor's surprise both the cyst and the polyp were gone.  Not smaller -- completely gone.    Cysts can rupture on their own, which I thought may have happened...due to some intense abdominal pain I had.  But the polyp on my uterine wall was large, and my doctor was more than shocked.  He said it's because I am younger, and my body was able to heal itself.  But I really think I had a lesson to learn. And through my prayers and the faith of others supporting me, the ending result was amazing; a true miracle.

Things are good.  God is good.  I'm still not pregnant.  But it's not about my timeline - it's about His.

As a great friend recently told me, It's all about 'Loving What Is'.  There is such beauty, contentment and relief in those three words.

And as for Cookie Cutters...they have me labeled as the Crazy Mom in their computer system.  Yep, I'm THAT lady.  I was five minutes late for my last (already scheduled - Not walk-in) appointment.  I watched the man at the counter look at his computer screen and say with a smile, "No, your appointment is in 10 minutes...you're actually early.  But I'll take you back right now."  Bless their hearts.  There is definitely a red flag by my name in their computer system and a note that says "WARNING - this lady has had a melt down before."

Yes, we walked away from that haircut with Free Balloons too.

The Wishing Tree

Two days after Sienna was discharged for a second time from PCMC - she was hospitalized again.  She was diagnosed with Pyelonephritis - which means her kidney's were swollen and full of infection.  Every day, the two kidneys process about 200 quarts of blood to produce about 1 to 2 quarts of urine...amazing right?!  Because of that, and how sick Sienna was...doctors thought the infection may have jumped into her bloodstream - which leads to sepsis.  We are so blessed the infection did not make it into her blood...and Sienna was only in the hospital for three more days - verses what could have been a much more heartbreaking situation. 

During our third stay at Primary's - I took Sienna on a number of wagon rides down to the playroom.  This is where we found the Wishing Tree; a tree showcasing the hope and prayers coming from parents, brothers, sisters, grandparents, aunts and uncles....

I was captured by the tree.  Its messages moved me.  I couldn't stop reading the shaky handwriting from sweet little ones pleading that their brother or their sister would stop hurting, get better, win their fight over disease/cancer/illness....and even get to come home someday.  

I was overwhelmed with gratitude.  During our stays at Primary Children's I saw SO many sick children.  Children who will never have the futures their parents envisioned for them.  I was humbled.  I also saw miracles and healing happen for children staying there.  PCMC is doing incredible things for hundreds of little ones!  Jody and I attended an LDS Sacrament Meeting while Sienna was in the hospital.  

Amazing.

  

We were surrounded by IV's, catheters, breathing machines -- and so much FAITH.   

I did not have to look too far to realize we are blessed.  


In the picture below,  you can read the hope....for a brother that his tumor might go away.  And then below it, a wish for a motorcycle...well, I guess it doesn't hurt to try...right?!  

A Visit from the Therapy Cat

I have had a number of people ask me how we kept a 21-month-old in a hospital bed for nearly 2 weeks.  She was SO sick - she didn't want to move.  It wasn't until the last day in the hospital when she started showing signs that she wanted to play.  (Best Day EVER!)  In fact, the nurses showed her how to shoot the lid off of the thermometer.  That was quite the game!!

Sienna will visit Primary Children's in September for another ultrasound.  That will show doctors if her kidney's are still refluxing/dilated.  {Fingers Crossed that they aren't, and the surgery worked!}  Thank you to all who prayed, hoped and wished for Sienna's recovery.  

A Long Road for a Little Girl...

On June 7th, Sienna had her ureters re-implanted into her bladder.  She was such a doll before the surgery.  And for not having anything to eat or milk to drink for 15 hours (because she had to fast before surgery) she was in such good spirits.  She looked darling in her tiny hospital scrubs.  Surgeons were about an hour behind, so we went for a walk outside on the patio overlooking Salt Lake City.  Little did we know - we would be seeing this view for two more weeks during some extended hospital stays.

*Sienna BEFORE her surgery*

Dr. Cartwright spoke to us before the surgery.  He was great.  The anesthesiologist had us sign lots of paperwork, and they were ready to wheel our baby away.  I was sad.  Clearly, she was in the best hands in a six-state region...but thinking of the pain she was about to experience, made me crumble.  We kissed her on the forehead, as the anesthesiologist took her away.  I started to cry once the operating doors clamped shut.  Now it was just time to wait.  After an hour and 1/2 in surgery, the OR Nurse called us from the Operating Room.  Sienna's vitals were good.  The next hour and 1/2 went by so slowly. 

After what seemed to be such a long wait, Dr. Cartwright came to speak to us.  Both ureters were re-implanted!  The left one (which is really two because it's duplicated) re-implanted smoothly.  The right one posed some difficulties for doctors.  They had a hard time getting it situated.  It took longer than they expected.  And that partly explains her extremely painful recovery. 

Only one parent can go to be with infants/toddlers in Surgery Recovery.  I had told Jody - it was going to be me.  But when they came to get one of us...Jody got up and went with the nurse.  I didn't want to say, "Hey...I thought I was going!!"  in front of the entire waiting room {mini tantrum}....so he went...and I waited some more.  I wanted to see her so badly.  When they finally told me I could go see her....I ran down the hall.  The Post-Op nurses told Jody she wouldn't let the blond nurse hold her...only the brunette.  Sounds like she wanted me as much as I wanted to be with her.

It took Sienna awhile to come out of the anesthesia.  Once she did, she had a difficult night.  She threw up repeatedly and wouldn't drink anything.  The nurses were so helpful in changing sheets, washing her favorite blanket and cleaning us both up.  Sienna just wanted to be held.  So we exchanged the crib for a bed, and I slept by her. 

She made progress, but two days later when we were discharged - she still had a low-grade fever and she wouldn't drink on her own.  I was nervous leaving, because she still seemed so sick.  Doctors say little ones tend to bounce back more quickly once they go home...Sienna didn't. 

We came home on a Saturday - by Tuesday, I was so worried.  I knew something was terribly wrong.   I took her to American Fork Hospital where they drew blood and took a chest X-Ray.  Within 15 minutes, Primary Children's had the lab results.  They called me and told me to bring Sienna to the Emergency Room immediately or they would send an ambulance.  I hopped in the car right away and drove, with my mind racing.  What was wrong with her?  What could they see in her tests?  They were waiting for us once we arrived at the ER - but they didn't have any definite answers.  Doctors did a number of tests.  Her blood work was completely abnormal, and she was running at temp above 104 with Motrin.  When technicians did an ultrasound on Sienna's tummy - they got their answer.

The technician gasped.  (Never a good sign.)  There were dark spots all throughout her lower abdomen. 

"What are those?"  I asked.
"That's floating urine," he replied.
"Where is her bladder?!"  I asked. 

It was hardly recognizable in the ultrasound.  It had ruptured, and was flat as a pancake. 

He pointed out the deflated organ.  Doctors had made a very large incision in her bladder during the surgery - days after, her bladder sprouted a leak - causing urine to seep out and eventually absorb into her bowels.  As you can imagine - that makes a person VERY sick.  Her tummy was very swollen, which is fairly normal after surgery...but a large amount of liquid was pouring out of her stomach where the stent came out.  Jody and I had asked the doctors about that.  They weren't too concerned at the time.  Now we know it was another indication that her bladder had ripped.   In addition to the tear, a respiratory culture showed Sienna also had  Para-Influenza-3 and Rhinovirius.  She was back in the hospital from June 12th to June 18th. 

Watching the Sunset with Daddy

Halfway through that hospital stay - Sienna hadn't eaten for 10 days!  I set up a meeting with a nutritionist.  We discussed a feeding tube.  I wanted her to have enough energy so her body could get better.  Urologists made the final decision on that one...and they said no.  I was frustrated, and I felt helpless.  By this time, Sienna had lost her hunger cues.  She survived on saline/potassium/sugar water through an IV for more than a week. 

We constantly ordered food for Sienna and offered it to her.  The hospital stay became more about the little successes.  The first time she didn't push the plate away...my heart was pounding.  "Come on Sienna - you can do this!"  She ate one green bean and three tiny carrot wedges.  I was ecstatic.  I ran out into the hospital hall doing high kicks and kung-fu moves.  I was so excited to tell the nurses they had something positive to chart. 

The days became long.   It was the same four hospital walls, and so much waiting.  Waiting for that 15 minutes in a 24 hour day when the doctor made the rounds to Sienna's room.  I didn't want to leave the room ever - in case you missed the visit.  I slept over with Sienna - all but one night.  Jody was there a lot too.  He missed days of work.

The bladder is a very strong muscle, and it holds the ability to repair itself.  After days of having a catheter, doctors felt encouraged that the leak was no longer a problem.  She was making progress again.  Sienna came home weak, but showing signs of improvement.  She had the catheter at home, and Gracie loved to carry around the urine bag for her little sis.  What a pal!  Sienna had the catheter in for 11 days.

By the 2nd hospital stay, Sienna's veins started collapsing.  Her IV would not last more than 2 days.  She had to keep getting poked.  My heart was breaking for her, because she didn't understand why she needed the IV or why she felt so miserable.  She had multiple IV's in her ankle, wrist and arm.     It took her days to regain her balance.  Even once she was at home recovering, she couldn't stand or walk by herself.  

(Now, when I catch her dumping cereal on the kitchen floor or emptying my makeup drawer...I smile a little bigger.  I am so happy she is feeling better after everything she experienced!) 

Tomorrow is the Day.

  

Sienna's surgery is scheduled for 11:15 a.m up at Primary Children's.  Doctors tell me it's a 2 1/2 hour surgery.  I am scared to see her disappear behind those Operating Room doors.  I know we can't be with her when the anesthesiologist is doing his/her job, but I just wish I could hold her as she falls asleep.  

I know that when I see her in recovery - she will be hurting, but whole.  This surgery can fix her kidney reflux and prevent any more kidney dilation.  I will be staying with Sienna over night for the next few days at Primary's.   We LOVE you Sienna!! 

A New Type of Hurt.

Why is it so much worse when your children hurt? Maybe because you want to bubble wrap them so that pain isn't an option in their lives. Clearly - that's not a solution. But I'm learning that all of the hurt I've felt in my life doesn't even compare to seeing your child struggle. Lucky for little CC - she is in really good hands with the physicians up at Primary Children's Medical Center.

We met with surgeons and pediatric urologists earlier this week. Little Sienna's condition is not going to get better, without the help of surgery. With Grade 5 Kidney Reflux on her left side, surgeons say there is an 85% chance this surgery will be successful and stop the reflux. Sienna is scheduled for surgery at PCMC on June 7th. She remains on antibiotics, and she will continue to take them 6 weeks post surgery too. The antibiotics are preventing her from developing another kidney infection - but her urinary tract is full of bacteria due to her kidney (or vesicoureteral) reflux.  Her bladder is not draining properly.  This is why she has been so sick.

Sienna's system looks similar to this picture. Her left side is distorted and dilated. After taking a closer look at her ultrasound pictures - surgeons think she has a partially duplicated system on the left side. That means she has two ureters connected to her left kidney, and then it appears they channel into one tube - attached to her bladder. So it looks like a "Y" shape. Those ureters are twisted and enlarged because fluids, which should be exiting her body...are being held in the bladder and then going back up - making it all the way to her left kidney. The doctors will be able to tell, during her surgery, if she has suffered any kidney damage. The non-working culprit that's been making her feel miserable is a flap-valve that is located inside of the bladder and attached to the ureters. It's not strong enough - so it's been allowing urine to relux back up into the kidneys. Sienna has Grade 2 reflux on her RIGHT side. Usually, with Grade 2, Doctors would put her on antibiotic therapy until her system could mature. (Usually around the age of 6.) But since they will be fixing the greater problems on her LEFT side - they will do the surgery on the RIGHT ureter as well. Surgeons will make an incision in her lower abdomen, much like a C-section. They will cut into her bladder and correct the flap-valve attachment. She will be at Primary's for 3 to 5 days, and then come home with ureteral stent tubes. Since her little system will be swollen, the tubes will come right from her bladder out of her tummy, above her hip bones. We can attach bags to her legs to collect the urine or double diaper her. She will have the stent tubes for a week or so.  

The more people I speak to, the more I learn there are many children suffering from some form of Kidney Reflux.  Doctors say it occurs in about 1% of healthy children.  It's something I had never heard of 2 months ago.  But research shows 1/3 of siblings have Kidney Reflux...so we will definitely screen for this in any future Taitor-Tots.  

Enjoying some milk!  Yummy.  

Sienna really loves to play Duck*Duck*Goose.  She randomly walks around tapping her head or a stuffed animal's head to keep the game going!

Thanks to all who have expressed kindness for Sienna.  This surgery has the potential to make her feel whole.  No more yuckiness and bacteria harbored in her system.  She's going to be okay.  I've been crying. A little.  Okay, more than a little.  I realize there are so many others dealing with things much, much worse...but my heart still breaks for my baby. It's overwhelming.  And yet, it's amazing that surgeons are skilled enough to identify and fix this problem.  

Poor Baby

We are heading in the right direction. We now have some answers as to why Sienna has been so sick. A recent ultrasound and VCUG test show us she was born with a duplicate ureter.

Nurse: "Well, Mrs. Tait your baby has a double ureter connected to her left kidney."

Me: "I don't know what that means!"

Nurse: "It means you will be spending some time up at Primary Children's with a pediatric urologist."

And so we wait for that visit, which is coming up soon.

Back in October of 2011 (Sienna was 13 months) she ran an outrageously high fever for days, with no other strong symptoms. She was diagnosed with a Urinary Tract Infection, which we later found out was a kidney infection. With the help of anti-biotics, she was healthy once again. And then earlier this spring, she ran another unbreakable high fever - reaching a temp as high as 105. I was so scared. I knew it was another Kidney Infection! Once diagnosed, the anti-biotic made her throw-up any possible liquids I could get in her. She was in the ER overnight, and thanks to modern medicine - we were able to nurse her back to health. 

Doctors, Jody and myself knew there must be an underlying problem. Staff at the Radiology Dept. at Primary's did a VCUG. It's a terrible test for anyone to have done...especially if you're 18-months-old. Nurses gave Sienna a catheter, mermaid-tied her legs together, and then injected fluids up into her bladder. The goal was to have her "go to the bathroom", so we could see if her bladder was draining properly. She was hysterical and very upset. When she finally released the liquids; we saw that she has a severe reflux problem. Much of the liquid went back up her ureters (those are the tubes that connect our bladder and kidneys) and into her kidneys. This is called Kidney Reflux. Reflux is rated on a severity level from 1 being fixable and 5 - Severe. She has Level 2 Reflux on her right side and Level 5 on her left. She also has an extra ureter!

Most people have one attached to their right kidney and one attached to their left kidney. She has two on her left side. Click here to read more about Kidney Reflux

My biggest concerns are that she may experience some kidney damage. Her left kidney has retained so much liquid, over time, that it is much larger than her right. This dilation can lead to kidney disease. My other concern is the ongoing pain she has felt. It breaks my heart to know that since the time she was born she has had kidney reflux, and we didn't know. Medical journals indicate that the expansion of the kidney, due to reflux, causes tummy and back pain. I feel so sad that she has never felt 100%. However, I am so thankful we live close to Primary Children's. Their specialists are fantastic, and I know they will have all the answers in regards to surgery and getting her to feel better.

Upon diagnosing her with kidney reflux, doctors put Sienna on a daily anti-biotic she will take for one year, and maybe much longer.  This will prevent her from getting any more infections.  I am anxious to hear what urologists have to say about surgically removing/blocking off that extra ureter.  Sienna will most likely have a VCUG every year now to make sure the reflux is not getting worse.

Sienna is a sweetheart. And we love her. And I am loving that volume in her hair!

And really. Look at her. Does this look like a girl who is going to let an Extra Ureter get her down?!? No way.  This little one is just as strong as she is sweet.  And as you can see, she thinks it's really funny to run away from me when I'm trying to clean off her face!