Causes: Rare Disease Day, FPIES Families.

Here's another post in my Causes series.  As most of you reading this know, Myra has Food Protein Induced Enterocolitis Syndrome, FPIES (said F-PIES) for short.  In honor of Rare Disease Day, I wanted to share a link to the FPIES Foundation's page that shares the stories of FPIES children, Myra included.

I overheard someone talking at Target yesterday about symptoms that sounded a lot like FPIES.  They had seen multiple doctors, ruled out reflux, and were considering seeing a neurologist.  I'm no doctor, but I've read enough of these stories to know, based on what I heard her say, FPIES is certainly a possibility for that little baby.  I didn't want to seem like a creep, but now I'm kicking myself for not saying something (I always say something!).  The more awareness that exists for obscure things like FPIES, the less families will be trudging through the horrible, confusing, stressful symptoms without answers or support...and the healthier our babies will be!

Click here to read stories from other FPIES families.

Causes: My Daughter has Vesicoureteral Reflux (VUR)

As part of my Causes series and in honor of Rare Disease Day, I am sharing Carlee's Vesicoureteral Reflux (VUR) story.  I found Carlee's mom, Morgan, on Instagram by searching #Neocate when we were considering switching Myra from breast milk to an amino acid based formula due to her own rare disease.  As a mom of a child with a rare health condition myself, I can completely relate to the lessons she has learned.  I loved reading their story and I am so glad Morgan was willing to share it.

Every parent says “We don’t care if it’s a boy or a girl as long as we have a healthy baby.” But what if you don’t have a healthy baby? What if from day one your precious little bundle of joy is sick? In and out of hospitals and doctors offices and you don’t have a clue what is going on? What then?

Our daughter, Carlee, was born full term and even though I ended up needing an emergency c section, she seemed to be happy and healthy. We were sent home 2 days later and everything seemed perfect. 

When she was 7 days old she became extremely lethargic, refused to eat, and had blood in her stool. Carlee spent the next 5 days of her life undergoing tests and being monitored very closely at our local Children’s Hospital. The doctors couldn’t seem to agree on what could be causing the lethargy and bloody stool. All of the tests came back fine and she seemed to be getting better. They switched her to a new formula, Nutramigen and diagnosed her with protein intolerance. We were sent home. We took her for weekly weight checks at her pediatrician’s office. She was still not gaining weight and still had blood in her stool. We were referred to a GI specialist who immediately prescribed her Neocate formula. The Neocate worked wonders and our little girl finally started gaining weight.

When she was 4 weeks old her doctor noticed that her kidneys felt a bit swollen and sent us for an ultrasound. She was diagnosed with Hydronephrosis (a backup of urine that causes the kidneys to swell) and referred to a pediatric urologist. At this point I was freaking out. I had no idea what Hydronephrosis was and what this meant for my baby. Of course I did what every nervous mom does and searched the internet for answers while we waited for her Urology appointment. I found very little and that only made me more anxious.

At 3 months old, Carlee’s Urologist sent her for a test called a VCUG (Voiding Cystourethrogram). A VGUG is an X-ray that helps determine the bladder capacity and emptying abilities. A catheter is inserted so dye can be injected. As the bladder is filling with this dye, X-rays are taken. The catheter is then removed and additional X-rays are taken while she urinated. Once the bladder is emptied, a final X-ray is taken. The entire test takes approximately one hour. – Now imagine all of that happening to your precious 3 month old who is scared out of her mind. It was awful and unfortunately it was the first of many.

The VCUG showed that Carlee had Vesicoureteral Reflux (VUR), also known as Kidney Reflux. VUR is the abnormal flow of urine from your bladder back up the tubes (ureters) that connect your kidneys to your bladder. Normally, urine flows only down from your kidneys to your bladder. She also had a duplicated ureter, which meant that she had an extra tube connecting her kidney and bladder that should not have been there.

VUR increases the risk of urinary tract infections which, if left untreated, can cause serious kidney damage. Other complications include hypertension and kidney failure. While some children outgrow this, some need surgery to cure it.  

When I heard this news I was at first relieved that we finally had an answer, a name to call it. Then, I was so upset that there was something wrong with my little girl that I couldn’t fix. I could cuddle her, love her, sing to her, feed her, change her, and none of that would fix this. I was completely dependent on what the doctors could do.

Carlee was prescribed an antibiotic to take daily to prevent possible infections. The plan was to pray that she would outgrow this as she got older. She would have tests every 3 months to monitor the condition of her kidneys and to see if the VUR got better or worse.

I am the type of mother who needed to know everything about this condition in order to get through it. I searched and searched for more information to better understand VUR and duplicated ureters. I only found medical mumbo jumbo articles that didn’t make any sense to me. I needed to know what was in store for my daughter and what we do if she doesn’t outgrow it. I finally found the support I needed in several Facebook groups for parents going through the same thing. I talked with several mothers who seemed to be experts on this and relief washed over me. My daughter was not the only one dealing with this. This was not something I would have to go through feeling we were alone in this journey. Over the next few months I learned so much about VUR from hearing other people’s stories.

Carlee was the happiest baby. Even through all of this she always had a smile on her face. She was beautiful, smart, goofy, and most of all strong.

Right after her 1^st birthday she started getting sick. Her pediatrician said it was a cold and sent us home. This was nearly 9 months after her diagnoses so I figured it probably was just a bad cold.  Tylenol and Motrin were not helping her fever. The next night her fever sky rocketed and she started shaking and staring off into space. She wouldn’t respond to us and we called an ambulance. We chose to go to our local ER because it was closer than the Children’s Hospital. The ER doctor…..how do I put this….well he was an idiot. He didn’t even know what VUR was. Told us that what definitely looked like a seizure to me was just “the chills” and sent us home. Her fever went back to normal so we went home and hoped she would rest and be better the next morning.

She wasn’t better the next morning and we took her to the Children’s Hospital. After we told them her history with VUR they immediately did a Urinalysis. Since she wasn’t potty trained being only 12 months, they had to insert a catheter to get a sample. My poor baby had to be held down because she would not be still. I felt awful because she was so scared but I knew that it needed to be done. The results came back a few hours later and she did in fact have a UTI (Urinary Tract Infection).

Now I’m freaking out (in my head of course so I don’t upset Carlee.) Does this mean that the antibiotics that she takes every single day are not working anymore? What do we do now? Why does she all of a sudden get a UTI after 9 months of having no problems? Nothing made sense.

She was put on another antibiotic for 10 days to fight the infection and sent home. She seemed to get better. Her fever was gone, she started to eat better and seemed more like herself. After she was finished with the 10 days of antibiotics we were told to put her back on what she had been taking daily to prevent infections.

One week later it all started over again. High fever, not eating or drinking, and Tylenol was not helping. We called her Urologist and were sent in to test her urine again. She had another UTI. That makes 2 in less than 20 days…

She was given yet another antibiotic and we were told to call if her fever did not go down soon. She wouldn’t eat or drink. She wouldn’t play with her toys. All she wanted to do was cuddle with mommy or daddy. She started throwing up every time we gave her the antibiotic. We called her Urologist and he said to come in right away. He wanted her admitted for IV fluids and antibiotics. She spent 2 days in the hospital confined to a crib/bed because of the IV. It was heartbreaking but I knew all I could do was be strong because that was the only option. Once she started eating and drinking again we were finally able to go home.

 

A month later she had another UTI. Her tests were moved up and a DMSA test was added to evaluate kidney function. The tests showed that her Hydronephrosis and VUR were both getting worse. Her left kidney had some scarring and her right kidney had decreased function. Now remember those support groups I was a part of? I knew the minute I heard this that she was going to need surgery. It still did not make hearing the doctor say it any easier though. We were given 3 options:

1.    Give her more time. Stay on antibiotics and keep praying that she would outgrow this on her own. (The doctor said this was very unlikely at this point but that he would give her a little more time if that’s what we truly wanted.)

2.    Deflux, a minimally invasive outpatient procedure, a gel material is injected around the ureter opening to stop urine from flowing back up. (50%-60% success rate for her grade of VUR and it was likely that she would need a second Deflux procedure)

3.    Ureteral Reimplant, open surgery where the ureters are re implanted into the bladder to correct reflux. (93%-98% success rate, 2 day hospital stay, 2-3 week recovery)

How does a parent choose? I trusted her doctor completely and knew that we couldn’t just wait and see if she outgrew this for any longer. We needed to choose between Deflux or reimplant surgery. We loved the idea of Deflux since it was an outpatient procedure but we didn’t want to have to put her through that twice. Even then the success rate was low. If it didn’t work she would need the reimplant surgery anyways.

We hated thinking about our baby girl having such a major surgery like the reimplant but it really seemed like the best choice for Carlee. It was going to be extremely hard but we knew it would be worth it in the end. She would be VUR Free and she wouldn’t be in and out of the hospital anymore. Nearly every VUR parent has to make this decision at some point and there is no right choice. Every child and situation is different.

When Carlee was 16 months old we walked through the hospital doors scared out of our minds. How were we supposed to hand our daughter over to these doctors and nurses and trust that they would bring her back to us? I know it sounds dramatic but when you are a parent in that moment that is what goes through your head. The hardest thing I’ve ever had to do is watch my little girl fall asleep under the anesthesia and then leave her.
The surgery was supposed to take 2-4 hours. It ended up taking close to 7 hours, 7 of the longest hours of my life.

 

The surgery went great and we went home 3 days later. Carlee was such a trooper. The day we got home she went right back to playing and running around. She still needed pain meds for a good 2 weeks but she bounced back faster than any of us thought she would. Kids surprise you.

On February 28^th 2013 (one year ago today) she had more testing to see how well the surgery helped. Carlee was VUR FREE!!

Right before Carlee’s 2^nd birthday she had one more ultrasound scheduled. We were not expecting to hear that while her VUR was gone, one of her kidneys had healed too tightly and was not draining completely. She needed another surgery. The doctor needed to place a stent so that her kidney would drain completely. It was a very short 10-15 minute surgery and the stent would be removed 6 weeks later. She had the surgery a week later.

We got home that afternoon and Carlee was in horrible pain. She was having bladder spasms and would not urinate because it hurt so much. We called the doctor and he prescribed something for the spasms. It did not help. Her body was completely rejecting the stent. Two days after it was placed the stent was removed. We spent another 2 days in the hospital because my sweet girl was so traumatized by the painful urinating that she refused to go. She held it for so long that the nurses had to drain her bladder with a catheter several times. The Urologist and I had a serious talk and he explained that if she kept holding it for so long it was going to continue to hurt when she released it because her bladder was being stretched. If this continued I would have to learn to use a catheter to drain her bladder at home.  We decided to take her home where she would be more comfortable and relaxed. We hoped that this would help her get back going more often. She did better after about a week.

Last month, we had more testing to see if the stent helped even though it was only in for a few days. We got the greatest news ever. Her kidneys are draining and her bad kidney has increased in function! We don’t have to take her back for more testing for an entire year. How amazing it was to hear that! After 2 years of this hell it is finally over. My little girl can finally just be a happy and healthy little girl and not go through tests all the time.

She still associates going pee with pain sometimes. We are still working with her on that. Otherwise she is a normal 2 ½ year old. She is my crazy, bossy, sweet, funny, smart, strong, loveable little girl. And I would do it all over again for her if I had to.

I have learned so much in the last 2 years.

I have learned nearly everything about a kidney condition that I didn’t even know existed before. I’ve learned that no matter how bad you think you have it, there is always someone else out there that is dealing with more than you are. So be thankful for what you have even if it’s not very much. I’ve learned that being a mother changes you completely, and being a mother to a child with health issues changes you even more.  I’ve learned how lucky we are to have so many friends and family there for us along this journey. I don’t know what I would do without them.

Thank you for reading our story and for the opportunity to share it. If your child is dealing with a kidney condition or any health problems, remember that you are not alone.
      
          “Sometimes heroes reside in the hearts of small children fighting big battles."

(Carlee with her little sister, Sophia.)

You can find Morgan on Instagram at mommyoftwo72049

 

Happy Birthday, Rowdy!

Our big boy is 4 today!

Time to go play in the snow with the birthday boy!

Flashback Post: Our Wedding.

Sorry folks, not a Valentine's Day person.  I'm a party pooper, I know.  I guess I think each person/couple has their own special day to be showered with love (birthdays, anniversaries) and Valentine's Day just seems so commercialized.  I know it doesn't have to be, but I just don't get into it.  Anyway, my attempt to get in the spirit is this: a post about our wedding. [Note: all photos were taken by R. Stidger Photography.]

Trevor and I met on my birthday in 2006 and officially became a couple in June 2006 (I was not in the mood for a real relationship at the time, but it happened eventually).  He deployed in June 2007, proposed while on leave from that deployment, and came home "for good" (rather, "until next time") in July 2008.  I don't remember exactly when I found out one of my very best friends, Michelle, would be deploying, but I for sure knew she would be leaving at the time of the proposal.  She left in June 2008 (that month overlap before Trevor returned was not fun).  There was no way I would be getting married without Michelle standing next to me, so when planning the wedding date, we decided to wait until September 2009 to be safe.  Keep in mind, nothing is ever for certain with the military, we have quite a few friends who got extended and extended resulting in a 22-month tour shortly before that, but we did the best we could.

I did not like wedding planning.  I was very excited to be getting married, but not to be planning a wedding.  We started with traditional plans (getting married at a local park, reception at a local hotel) and it was a mess.  Our guest list was out of control (476 to be exact) and I was begging Trevor to just go to the courthouse with me.  I wanted to marry him, I didn't need a huge wedding.  He refused, telling me I would regret it (he was probably right), but we both agreed we just couldn't have the huge wedding that was in the works.  We shifted gears and started doing planning for a destination wedding to Jamaica.  We would use our wedding budget to help our bridal party pay for the trip-it would still be expensive for them, but everyone seemed excited.  I won't get into the reasons it didn't work out, kind of grumpy about that, but we needed to find a compromise somehow.  I looked into not-so-extravagant destination weddings and went from Jamaica to Florida to the Shedd Aquarium in Chicago to the aquarium area at the Minnesota Zoo, when they still had dolphins, of course.  I've been a huge dolphin nut since I was about 7, so it seemed like a really fun, unique venue for us (that's what got me thinking about Chicago/Shedd Aquarium prior to the MN Zoo idea).

The capacity for the MN Zoo area we wanted was much smaller than our original venue.  Some of the cuts were very hard to make, but we just had to do it.  We ended up going from 476 to under 200.  We invited many people to head to Sneaky Pete's with us after the festivities, but there was just no way to do it all and still fully enjoy it.  We have a lot of friends and I would have loved if we could have included every single one of them, but it just wasn't going to work.  It was getting out of control.  Ultimately, we don't regret anything and the day was absolutely amazing!

We had friends fly in from all over the world to be there with us.  After we had already had a lot of money down and arrangements made, we found out one of our groomsmen would be deployed at the time of the wedding.  He was able to arrange to take his leave at that time and was there for everything, all the way from Iraq.  Another friend from Spain made the trip to be there for our special day, too.  It was amazing to see all the people who traveled near and far to be there with us!  

Chaplain Gustafson was Trevor's Chaplain for his deployment to Kosovo and we had both gotten close to him.  We were honored he was able to officiate the ceremony.  Trevor is more than "just" a soldier, but it is a big part of him and our family, too.  We chose not to have a full military wedding, but did ask Chaplain Gustafson to wear his uniform for the ceremony to symbolize that part of our lives.

Here is our wedding day in photos:

Trevor was so anxious and excited to see me-I think he almost passed out and/or puked.  Side note: Trevor arranged for me to have a massage in the hotel before I got ready that day-total surprise!

We had the most adorable kiddos there for our day!

As part of my boycotting to traditional wedding planning, we did not require RSVPs, didn't get "bridesmaid dresses" (they were party dresses), had no decorations (other than some fairly minimalist centerpieces I shared with another bride), no flowers, and no favors. And no one cared.  I did have a bouquet...made of artificial flowers and it is still on our mantle now.  There were 9 calla lilies, each representing a loved one who had passed away.  The blue flowers are forget-me-nots to symbolize remembrance.  The red berries were to make the whole bouquet red, white and blue.  The bouquet was tied with yellow ribbon, the color used to show support for our troops.  So, the bouquet in its entirety was symbolic for our loved ones who couldn't be there and our appreciation for our nation's military.  Much of our bridal party included veterans, their spouses and their children.

 

We had a lot of ushers!

I picked out my dress long before Michelle Obama debuted her one-shouldered white dress at the inaugural ball, wanted to make sure the world knew that ;)

Family

 I never got cold feet or panicked, but once everything was in place and we just had to sit and wait while guests arrived, I was flushed with anxiety.  I just wanted it to be go-time! This is the only photo I have of some mild bride crazies.

Our aisle was walking through a giant shark jaw.

Rather than unity candles or sand art or whatever people are doing these days, I found this idea somewhere.  Trevor and I wrote letters to each other explaining why we knew we are right for each other.  We put them in a box with two bottles of wine and we are not to open it unless our marriage is seriously in trouble or at our 25th anniversary.

 

Then the dancing began, right there at the Zoo, too.

 

Here are a few more favorites from the day.

While working our wedding date around Michelle's deployment and my extreme dislike of hot weather, we weren't left with a ton of options for dates.  We ended up getting married on Michelle's golden birthday and Shane's birthday was two days later.  I promised her we wouldn't draw attention to her birthday.  I lied.  We sang and had birthday cake.

And...these are no longer our photographer's photos, if you couldn't tell.

The party bus was arguably the best part of the entire day.

The bar afterwards.  Someone asked me if I was there for prom. (Who goes to prom over 21 years old? Who has prom in September? This is clearly a wedding dress??)

Knowing what I know now, I'd do it over again in a heartbeat, but I'd skip to planning a wedding we both want and not a wedding we thought we were supposed to have.  It. Was. Perfect.  Planning your marriage is far more important than planning your wedding.