Iowa City - 2015

Yesterday we ventured to Iowa City for Brady’s yearly procedure and specialist appointment.  To those of you who sent messages and prayers our direction, we thank you from the bottom of our hearts.  It truly means the world to know we have a strong support system behind us, no matter what.

 

As mentioned previously, we decided to do mild sedation for Brady.  This meant nothing to eat or drink eight hours prior to his appointment, which had us checking in at 9:30am.  Originally I wanted to stay in Iowa City the evening before to help with this aspect of the trip, but our schedule warranted us staying put and traveling in the morning.  Believe it or not, Brady did great!

We checked in and headed back for sedation.  There was quite a team involved but the most important person for us yesterday was the child life specialist.  This was someone I really wanted with us during the day and boy was it a life saver!  She immediately greeted us and got acquainted with Brady.  Even though I hadn’t made mention of Tessa tagging along, someone else from the staff must have because the child life specialist came prepare with specific books and toys tailored to her as well. 

The child life specialist familiarized Brady with the mask he would be wearing and let him pick out stickers and decorations for it.  She even let him smell different scents to put in it and he loved that “game.”  He chose cotton candy. 

Once everyone was in position and Brady was settled (I sat in a corner facing the wall with Tess on my lap) they began the sedation and catheter placement.  As mentioned before, there was a lot of staff involved between the doctors, nurses, child life, etc.  One member of the staff was next to the wall I was facing.  I happened to look over at her to get an idea of how it was going, even though I could hear everything, and she was crying.  When I saw that, I had to turn and watch for myself while being cognizant of making sure Tessa didn’t.  All I will say is that it simply isn’t easy to watch your child be in pain.

After catheter placement we need to go to Radiology for Brady’s VCUG procedure.  We ended up waiting for over an hour in the waiting room.  This was not ideal as Brady was feeling the pain and discomfort of his catheter.  He would want to stand, then sit, then attempt to rip off his hospital bracelet, and then cry…it was a vicious cycle and again, I couldn’t have been more thankful for the child life specialist.  She left only briefly and then came back to help us change Brady’s focus.  Even though David and I were at good odds with the kids (1:1) it was so nice to have that third person to help!

Finally we were able to head back to the procedure room.  David assisted in Radiology while Tess and I sat behind the partition.  I wanted to be able to watch but not be in the way.  With work and multiple appointments, I am getting decent at ready the images when they appear.  It wasn’t long into the procedure for us to realize what we were dealing with.  The Radiologist was able to get great images with a full bladder and would get some after voiding as well.  Brady refused to go on the exam table and kept saying “go on big boy potty” so that’s what we did.  Luckily there was one adjacent to the exam room and I think he was anxious to get off that cold table!  Unfortunately, images were needed after using the bathroom so he wasn’t too happy with anyone.  The whole procedure took about 25 minutes.  When it was over, child life gave him a sweet little buffalo beanie baby named Roam.  Roam has not left his side for the past day. J  Tessa was also given a small lego set.  Both of these items were a great distraction as we ventured to our third and last appointment of the day, sans the child life speciailist.

We met with the specialist around 1pm for our last appointment.  Both David and I had a good idea with what we were facing going into it, but definitely wanted to hear his remarks.  Here’s what we know:

-The right kidney (his small kidney that does 25% of the work) showed nearly spontaneous resolution at his appointment last year.  This year, the reflux is back and is at least a grade III.  Big question from us; does it really come back like that or was it somehow missed last year?  According to the specialist, it is possible for it to come back.  Hmmm

-The left kidney showed grade IV last year and is still showing reflux this year.  This is Brady’s normal size kidney that is doing 75% of the work. 

What do we do now?

Well, Brady has not been getting infections, so the doctors feel confident his kidneys aren’t seeing much damage from the reflux.  There is still a chance that he may outgrow all of this.  However, Brady was born with grade V reflux on both sides, so his likelihood of outgrowing it isn’t as high. 

We were told at last year’s appointment that if the reflux hadn’t improved, they would recommend surgery.  However, given how little Brady is, they would like to see him have the opportunity to grow another year and repeat all testing next fall.  If the testing shows continued reflux, surgery will happen as Brady is a bit of a special case due to his insufficient kidney size and functioning.  All of this will change should he have any infections prior to next year so we are hoping for a healthy little boy in the months to come!

A Tale Of Four Kidneys

As many of you know, Mr. Brady suffers from a kidney condition; one that we’ve been dealing with since before he was born.  You can find his full story with this post and his most recent scans and outcome with this post. 

Since this is an outgoing issue with him, our visits to his specialists are ongoing as well.  We had a couple of appointments over the last two weeks so I wanted to provide an update for everyone.  Brady had a routine ultrasound on his kidneys, ureters, and bladder.  This was followed up with an appointment with his nephrologist and a trip to the lab for some blood work. 

Brady was inconsolable during the ultrasound but luckily it went fairly quickly.  Our appointment with the nephrologist was nothing short of agonizing.  The nurses had a horrible time taking his blood pressure, resulting in undesirable numbers each time.  Sometimes this can be blamed on the age of the child, recent activity, or restlessness; all making it uneasy for accurate results.  However, he was fairly still (thanks to tons of bubbles, toys, music, etc.).  Blood pressure is a major concern with children like Brady as it is a side effect of his condition.  Needless to say, the numbers were worrisome for us and the nurses.  They had different staff attempt, using both automated and manual cuffs that all retrieved the same or nearly the same result (as automated and manual cuffs will vary regardless).  We ended up waiting nearly two hours and his blood pressure was retaken.  At this point he was happier and obviously calmer.  The blood pressure read where it should.  However, we will be more cognizant about monitoring his pressure at home here and there as follow-up.

During the interim of the blood pressure fiasco, we met with the nephrologist and received the results of the ultrasound.  They were as we suspected; there was no change in his condition.  Anymore I take no additional news as great news regardless of the outcome. 

Next up was a trip to the lab as we always have blood work taken to measure his creatinine and some other blood factors.  All four of us went into the kid’s blood drawing room where the exam table is a giant rhinoceros; sort of cute, sort of scary.  I guess I should say that we attempted to all walk into the room.  David went first, followed by Tess and then myself.  Mr. Brady peaked his little head around the corner and then said no, no, no and started running back down the hall.  This was heart-wrenching.  I know people constantly tell me that Brady won’t remember any of this when his is older.  Although I do understand that this statement is true, I also know that he does remember now.  He remembers that stupid rhinoceros and the pain he felt while he was there each time before.  He remembers the jelly on his belly during all his ultrasounds and the catheters that he has had one too many times.  The little man can walk into a hospital and immediately knows the something is going to happen.  As the parent, you get a really awful feeling in your chest but just do the best to console them as they look up at you with their big brown eyes and wonder why.  Ugh…

Anyway,  I immediately realized I would take Tess back out to the waiting room as it is hard enough for me to watch a blood draw on Brady’s tiny veins.   We listened to him from the waiting room and only minutes later we were done.  The whole series of appointments lasted nearly the entire work day; talk about exhausting for all of us! 

Thankfully, we should be done with appointments for Mr. Brady until the fall (fingers crossed).

Now, the title of this post is a tale of four kidneys so here is part two of this little story.  Brady’s kidney issues are genetic.  It isn’t common for it to “skip” a child so there has always been concern from multiple specialists that Tessa may suffer from the same issues that Brady does.  She has not had any kidney infections that we are aware of, although often the symptoms are masked by symptoms of other common illnesses.  That being said, we have been waiting to get all her paperwork through and billing completed so she can be examined as well.  Lord help us.  Tessa’s ultrasound was a week after Brady’s.  David was out of town so I called in for some assistance and my mom drove down for the day.  We got Tessa registered (she loved the hospital bracelet) and soon she was called back into the room.  Mom carried Brady back and I carried Tess.  The moment we stepped into the room, Brady went hysterical.  I’m certain the little man thought he would be poked and prodded again.  Mom immediately took him back out to the waiting room and distracted him with toys.  It was at that moment when Tess realized that we were not at the hospital for her brother.  She clung onto me like a starfish and I found myself lying on the exam table with her on my belly as she refused to let go.  She cried and laid her head on my chest and they took images from her back first.  When it was all said and done, Tessa did an amazing job.  She was really brave and the staff divulged stickers of every character imaginable (which were shortly everywhere in my car, our clothes, and all over the house that night); what a hit!  We received Tessa’s results that day and are extremely relieved and happy to report that she has two perfectly functioning kidneys, ureters, and one awesome bladder.  Oh, the things that thrill me, right?

I think that’s enough talk about organs for one day.  I hope you all had great weekends!

Iowa City

This week we headed to Iowa City for Brady’s VCUG.  I have been dreading this trip because I have nothing but awful memories from his previous experience.  There is nothing worse than watching your child be strapped down to a board, swaddled in a papoose, and seeing their eyes gaze up at you as they cry for help – only to find yourself unable to do anything.  It’s an awful, awful feeling and I am just thankful that Brady is young enough that he shouldn’t remember any of this.

Both David and I were in the room during the procedure.  I was considering staying in the waiting room but when it came down to it, I just had to be in there with Brady.  I chose to stand to the side this time and had David be the one gowned up to assist.  Luckily, this VCUG only lasted about 25 minutes so the torture for all of us was over much quicker than we anticipated.

The other great thing is that we were able to get initial feedback from the radiologist right then and there and meet with our specialist shortly thereafter.

I did leave out some information in my last post that would be beneficial as I explain his most recent results.  Brady’s right kidney did not grow as his other one did.  It is quite small.  Because of this, it only does 25% of the work while his left kidney, which is of average size, does 75% of the work.  Obviously it would be ideal for them to be sharing the work 50/50 but at least they are both functioning.  That being said, here is what we learned:

·         Brady’s right kidney (the small one) showed no reflux during the VCUG.  Both doctors are confident the issue has resolved on its own as Brady grew.

·         Brady’s left kidney is still showing Grade IV relux.  Because this kidney is doing the majority of the work and the dilation occurs very early as the bladder fills, this is still a big concern.

·         From here on out, all high fevers will require a urine test to rule out UTI infections.  It is quite possible that with all Brady’s recent illnesses that an infection was being masked and later resolved due to being prescribed antibiotics for other symptoms.  If Brady has a UTI prior to next October (one year from now), it sounds as if he will be having surgery. 

Overall, this was a very positive appointment since his right side showed such improvement.  We can only hope as Brady continues to grow that the left side will also resolve.  Here’s to healthy kidneys and no infections!

So Tuckered Out After It All

Our Son's Story

After the experience I had with Tessa (vomiting every day up until my 27^th week) I vowed I would never get pregnant again.  Yet somehow I convinced myself that things would be or at least could be different the second time around.  Well, the second pregnancy started out much like the first.  I was sick, sick, sick.  I was convinced I was having another girl because of it.  Our lives were pretty crazy at the time.  David was commuting back and forth from Nebraska to Iowa for his job and we were getting ready to soon start thinking about selling the house and moving.  With all the “unknowns” in our future, I told David that I wanted to find out the sex of baby #2.  We had kept it a secret with Tessa and that was so much fun and made the day of her birth even that much more exciting!  Yet, I wanted to know what it was like each way (and my Type A personality needed to have something known in her current life of chaos) so I convinced David to jump on the bandwagon with me.  We had the doctor write down the sex on the ultrasound photos and took those photos (sealed) into a local bakery.  The owner whipped up some surprise gender cupcakes for us to take to see our families and do a big reveal.  When we bit into the cupcakes, we were greeted by sweet baby blue frosting.  I was surprised but couldn’t have been happier – we would now have one of each!

One of the few photos of Baby Burns

June, 2013 - Week 28 

David did not have the luxury of attending many of my OB appointments.  In fact, he missed the “big” 20 week ultrasound.  Due to his absence, and since my OB was the best around, he did a full body anatomy ultrasound at my 28 week appointment when David could attend.  My OB went sight by sight and we were having a great time laughing and joking around.  Within an instant I noticed that my doctor became quiet (which he never is) and kept scanning over a particular section of my tummy.  He showed us what looked like a picture of a flying bird (I will never forget that imagine) on the ultrasound machine.  He mentioned that he had some concern regarding Baby Burns’ kidney development and wanted us to see a specialist right away.

We left the 28 week appointment and grabbed brunch before our hospital appointment with the fetal specialist.  After a series of routine scans and images, we met with our specialist one on one.  He let us know that Baby Burns’ right kidney was not functioning properly.  He was unable to tell from imaging if it was due to an obstruction in the ureters/kidney or if there was a developmental (congenital) abnormality.  Regardless of the cause, fluids were not draining properly and his kidney was becoming enlarged.  This condition is called hydronephrosis.  It occurs in about 1% of pregnancies and typically goes away after the fetus has more time to grow and develop.

July, 2013 - Week 32

I had an appointment with my specialist to get updated images.  The results showed that the hydronephrosis in the right kidney had not resolved.  In fact, it had worsened to be considered severe.  We were also told that the left kidney was showing enlargement.  Baby Burns now had bilateral hydronephrosis and the cause of the condition was still unknown.  The nurse measured my amniotic fluid levels and those were normal.  This was very good news.  As you may know, the amniotic fluid consists of the baby’s urine toward the end of the pregnancy and this is what allows their lungs to develop.  Because my levels were normal, my doctors wanted me to continue carrying the baby as long as possible.  The damage done to the baby’s kidneys at this point posed a lower risk than the idea of taking the baby at such a young age.

August, 2013 - Week 35

It was our 3^rd wedding anniversary.  David had the day off for us to celebrate – so we spent the morning at the specialist (romantic huh).  The left kidney (which was just recently showing hydronephrosis) was measuring closer to normal limits.  The right kidney was still considered severe.  We were told to be prepared that Baby Burns may need surgery.  Unfortunately, until he arrives we didn’t know what we were dealing with.  My amniotic fluid was checked again and was measuring low.  After all these appointments and a million pictures of kidneys, all I wanted and begged the nurse for was a photo of my baby.  Because I had limited fluid, the baby was pushed up against my abdominal wall and they couldn’t get one.  I was completely crushed.  I would be watched even closer now since the fluid level is so critical for development.  As if there wasn’t enough to be concerned about, we were told that the current testing revealed that Baby Burns’ heart wasn’t functioning properly.  He was experiencing mitral valve regurgitation.  This is where the blood is allowed to flow in two directions during the contraction.  Some blood flows from the ventricle through the aortic valve – as it should – and some blood flows back into the atrium.  Neither David nor I could be speechless, but immediately began asking questions.  We were riding a roller coaster of emotion but knew we needed to have all the information so we could keep processing all that was happening.  After we left the doctor, we went to my favorite breakfast restaurant in Omaha hoping that the granola pancakes would make us feel better.  Even though they were delicious we both cried heavy tears over our plates.  There were so many unknowns at this point.  We were told to be prepared for it all – and we did the best we could.

August, 2013 - Week 35 + 5 days

I went to see my specialist for a quick check.  There had been no change, but we didn’t expect any since it had only been about a week.  They did measure the amniotic fluid levels (still low but ok), checked the kidneys, and verified the heart was still irregular.  Even though nothing had changed, I was so happy to not receive any more news.

August 16, 2013 – Day 1 of Week 36

Even though it had only been two days since I saw the specialist, I saw my OB that Friday as originally scheduled.  I had asked if it was necessary for me to see both in the same week, attempting to cancel, but they wanted me to come in “just because.”  I listened to them and my appointment started out as all the others; sitting in the recliner hooked up to the fetal heart monitor.  The nurse struggled to find baby’s heartbeat so after a few attempts she called another nurse in for help.  I didn’t think anything of this as I know it can be difficult with those little ones moving around so much.  Anyway, the second nurse failed at her attempt and they left to grab a third partner to assist.  When this happened, and I realized it had nearly been 45 minutes, I began to feel nervous.  My OB peeked in the room to see what all the commotion was and immediately took me off the monitor and told me to come into a procedure room with him.  Using ultrasound he scanned around my belly and then had me sit up.  His first question to me was “Where’s David today?”  I told him he was in Iowa at work and then his next words were “I don’t want you to freak out, but you need to call David and tell him to come home.  Then you need to drive to the hospital.”  He told me to get dressed and ready to go.  He was going to step out to call the hospital and then would be back in to discuss more.  Sometime from Wednesday morning at my specialist appointment to this appointment on Friday morning, I had lost what little amniotic fluid I had.  Baby Burns did not have a heartbeat – or a readable heartbeat on their machines.

I called David and all I could utter to him was that my appointment did not go well – they can’t find a heartbeat – and I am leaving for the hospital.  He said he would leave immediately and meet me there as soon as he could (approximately 2 hours later).

I got into my car and called my mom (who was watching Tessa at the time) and told her what was going on.  We decided it was best to have her stay at home so I could get into the hospital quickly and then she would bring Tessa later after we knew more details.  After I hung up with her I called my dad.  He met me at the hospital so I wouldn’t have to be alone.  I also managed to call my sister and my brother to give them an update.  Have you heard that saying where in times of crisis, everyone will gather?  That is what happened for me.  Our families dropped what they were doing and drove/flew to the hospital from states away.

I checked myself in and went straight up to the maternity floor.  It had been another hour since I was at my OB.  Time was getting away from us no matter how fast everyone was working.  It seemed like an eternity but finally there was a heartbeat – it was faint and sporadic, but it was there.  I can’t even express in words the emotions I felt and I really don’t think I had shown any either.  I was so numb to all that was happening and all we had been through in those past few weeks.

Twelve hours after I arrived for my OB appointment, Brady Samuel Burns arrived.  I think back to how many times I tried to cancel that appointment – God wanted me there that day.

I barely remember seeing him, as the NICU team was right there to take him for tests, but I could hear the sound of his cry.  I knew he was breathing and his heart was beating.  Soon I was able to hold him, all five pounds of him, but not for long.

 

 

Auntie Kim & Andrea Showing Tess Her Brother For The First Time.

Brady stayed in the NICU for five days.  If any of you mothers have had to endure this, you are very strong

 because of it.  Those were the most difficult days of my life thus far.  Having another child at home who did not fully understand what was going on or why mommy wasn’t home each night only added to the grief.  Thank goodness for family.  I don’t know what we would have done without them!  

Keeping Warm



Tess & Brady Looked A Lot Alike When They Were Born.

While in the NICU, Brady had many tests and scans done.  His heart was beating but there was an arrhythmia.  His kidney scans were somewhat inconclusive due to his small size.  We were discharged knowing there would be continuous follow-up.

Going Home - Look At Those Skinny Legs

October, 2013 – Week 2

We took Brady for an eight week check-up.  He was just shy of 10 pounds and was 21 inches long.  He was measuring in the 3^rd and 5^th percentiles.  My doctor was ecstatic that he made it on the charts!  With good growth, he was now able to have his follow-up testing done. 

October, 2013 - Week 3

A week later I returned to Children’s Hospital for an EKG and renal ultrasound.  Brady’s EKG came back normal!  No arrhythmia, faulty valves, or regurgitation - at least not enough to cause him an issue.  God is good!  On the other hand, both kidneys were still holding fluid and were dilated to the moderate-severe category.  His ureters were also dilated.  Now that Brady had grown, the doctors wanted to do a special test called a VCUG – Voiding Cystourethrogram - to see if he had reflux.  This occurs when the valve in his bladder isn’t working properly causing the urine to push back up.  If reflux was causing the issue, they would grade the severity on a scale from 1-5 with 5 being the most severe.

We were able to schedule Brady’s VCUG for the following day.  It was just him and I for this test as I knew I would need to be back in the procedure room with him.  They strapped down his chest, arms, and legs to the table (very awful for a parent to see) so he couldn’t move at all.  He stared up at me with those big brown eyes and I just kept smiling to let him know he was safe.  Dye was injected through a catheter and a series of images were taken to follow the flow.  This procedure took over an hour and after lots of uncontrollable crying from Brady, I was able to hold him and get him dressed.  We left the hospital and met mom and Tessa for lunch.

 I went for a walk that afternoon and received a call from the doctor (there were too many at this point to keep track).  This test confirmed that Brady has VUR – Vesicoureteral Reflux.  One kidney was graded a 4 and the other a 5.

October, 2013 - Week 4

After a fun Sunday of Trick-or-Treating with the kids at the outdoor mall, we returned home for dinner.  I noticed Brady was warm.  He had a fever.  It continued to increase over the next couple of hours.  We called the pediatrician for advice and later that night David was driving Brady to the ER.  The fever was not coming down and all the initial tests came back normal.  Then David called to tell me they were doing a spinal tap. I completely lost my mind.  I continued to stay at home with Tessa while she slept but in the wee hours of the morning I went to the hospital and left Tess with my folks.  Brady was admitted to the fourth floor with a severe kidney infection, a hospital acquired infection from his VCUG the week prior. 



We Watched A Lot Of Mickey Mouse In Those Early Mornings

We spent five days in the hospital.  Luckily they had a playroom nearby for siblings and a library to check out books and DVDs.  That helped me keep Tessa entertained as David had to be at work during most of this.  We were discharged on October 30^th – just in time for Halloween.

December, 2013

Now that the doctors knew the cause of Brady’s hydronephrosis and had graded the severity of the reflux, it was time to see how much damage his kidneys had endured.  This would be done with a DMSA scan.  I don’t know a ton about this so I will copy info from literature we were given to describe it.  “A DMSA scan is a radionuclide scan that uses dimercaptosuccinic acid in assessing the renal morphology and structure of the kidneys.  It is the most reliable test for diagnosing acute pyelonephritis.  DMSA in injected intravenously, and uptake by the kidney is measured two to four hours later.”  Needless to say we were at the hospital for a full day again.  We received a lot of information on Brady’s kidneys after this test.

 Where are things now?

When we moved we transferred our care to local specialists.  Brady meets with a pediatric urologist here in Des Moines.  He is very proactive, informative, but sometimes too blunt for me (“You would never know your son is so sick when you look at him.”  Thanks doc).  There isn’t a pediatric nephrologist in town.  We contemplated continuing our care with the specialist in Omaha but decided to take a different approach and have been meeting with one in Iowa City. 

We will take Brady to Iowa City soon to have another VCUG.  Hopefully it will show that his reflux is improving, his hydronephrosis is minimized, AND hopefully we avoid a hospital stay like last time!

1 Samuel 1:27

I prayed for this child and the LORD has granted me what I asked of him.