Our story...

This journey did not start today, or yesterday; the road for us began January 11, 2008, the day Vanessa and I met in Ann Arbor, Michigan.  We wed in July 2012 with big dreams of building our careers and settling in a house that would become a home to raise our children.  We have since developed our careers and settled into a house that has become a home, but one thing remains out of reach in a distant fantasyland—children. 

Our struggles with having children started back in early 2014 when we began talking about the “birds and the bees” at the dinner table.  Satisfied with a perfectly melty grilled cheese and a bowl of tomato soup our hearts filled with unsurmountable warmth and joy; we began imagining how amazing life would be.  In the fall of that year, we began attempting for the extraordinary feat of conceiving on our own.  We struggled for months and with much frustration, we decided to seek guidance from a physician that specialized in reproductive medicine.  Months followed with an assortment of protocols of fertility cocktails and to no avail.  A year of these “experiments” and struggles lead us to IVF (In Vitro Fertilization), an invasive option for many couples that battle with fertility issues.  This option we honored also carried a lot of stress of taking additional fertility medications as well as timing injections prior to the hopeful egg retrieval.  What felt like an eternity, the egg retrieval occurred, a few days passed for the results of the successful egg fertilization.  With slight despair, our fertility doctor informed us that 6 eggs fertilized, however, only one slow developing embryo was strong enough to be implanted.   Again, the wait was on!  A pregnancy test in two weeks to follow, hopefully a miracle would take place.  Well, we walked the line with hopes another would follow suit—no line, negative, yet another road block.  Distraught and exhausted at this point, we were left wondering if we would ever be fortunate to have children. 

We decided to take a break from what was becoming a contentious situation and roughly one year later, the seemingly improbable came true.  May 2017 presented us with a positive pregnancy test, all without any assistance of fertility treatments.  We were ecstatic and kept our lips sealed and well, six weeks into the pregnancy we symptomatically experienced a miscarriage. An ultrasound would follow, verifying our feeling of discouragement. Furthermore, from what was identified by ultrasound imaging, a radiologist urgently expressed concern for an ectopic pregnancy. We were informed to head directly to the emergency room for further evaluation and treatment.  While sitting in the emergency waiting room, we both disclosed the information to our parents.  Our name was finally called and with heavy sighs, we followed a nurse to our designated residence in the ER.  After tests and expedited evaluation, emergency medicine physicians came to a conclusion, “we cannot confirm if it is ectopic.”  With probable evidence supporting a miscarriage and/or an ectopic pregnancy, emergency medicine prescribed methyltrexate, a medication that inhibits cells from dividing.  Thus, inhibiting the ectopic pregnancy from developing and preventing future complications.  From June of that year to September, a lot of energy was dedicated to this condition. A mental and physical break was mutually prescribed from yet another exhausting circumstance.

Moving to 2018, a new year and a new you, well “us,” was celebrated!  Although it was the same clinic, by our request, we sought guidance from a different reproductive medicine professional with hopes this try would grant us with a golden ticket to the world of parenthood.  After some changes of fertility dosages and supplements supported by new research, we were bound and determined it would work.  Like I said, “New year, new us.”  It WAS a new us after all! In April 2018 we were fortunate to have another positive test.  Though we were happy with the outcome, our past haunted us and solemnness poured through our veins.  However, after a scheduled seven week ultrasound reviled our future child, we had to disclose the exciting news!  With an enormous amount of emotion, at nine weeks we unveiled the exciting news to our parents; after time of course, we personally informed extended family and friends.  As any happy couple and future parents do, at 12 weeks we started documenting weekly bump pictures with our amazing dog Shandy.  With each passing week, with remarkable speed, our happiness grew along with Vanessa’s baby bump.  We were on a steady track to one day receiving #1 Mom and #1 Dad coffee mugs. We were right on track until the 20 week “anatomy scan” ultrasound.  During the scan, we tried to remain balanced in our emotions, however we shed tears of joy and squeezed each other’s hand to express our strength of love for each other.  After the ultrasound, some time passed before a physician presented the diagnostic results with us future parents; I decided to depart for home prior to a physician disclosing the precious details.  Leaving confidently, I reached the half way mark of traveling home, and Vanessa calls—urgently.  With a hesitant voice recovering from her tears, she informed me that the ultrasound showed the baby’s kidneys were enlarged and were bright on ultrasound.  My periphery became foggy as a stream of emotion ran through me, I had one option, make my way back to Vanessa to conceive the new world we were about to enter. Full of adrenalin, I frantically arrived and found Vanessa sitting in a small room dedicated to consultations with medical staff.  Directly across a small table was the genetic counselor providing the news.  It was described in fairly simple terms that the bright “echogenic” enlarged kidneys on ultrasound were typical signs of Autosomal Recessive Polycystic Kidney Disease, ARPKD. Fading deeper and complicating the discussion, ARPKD was described to us as a rare genetic disease (1 in 20,000) with mutations in the PKHD1 chromosome that is passed down from both Vanessa and I.  That mountain of happiness growing concurrently with Vanessa’s baby bump dismantled to a deep valley of sorrow and frustration.  At this half way mark of running a 40-week marathon, a choice given to us to terminate the pregnancy was not in our beliefs and at this point, giving up was not an option.

 We have since gone through genetic testing (amniocentesis), met with Nephrology, spoken to social workers, and discovered many resilient characteristics about ourselves that have lead us to this point.  Though we individually experience ups and downs, we have most importantly developed a much stronger bond as a couple.  Moving forward, we do not know the future conditions the road we’ll travel however, we understand we have support from all directions to help pave a smoother path. 

We hope sharing our story will enlighten you all from a distance and comfort us as we cope.

The day our path changed

Are we there yet?

During our near 8 week stay in the NICU, we have seen neighboring babies and their family’s move in and move out quickly.  Some neighboring babies have stayed for a few days and others have been evicted after a week or two. However, shortly after surgery, we were able to find a new residence with a view, we still remain.  This may sound discouraging to some of you but, we understand that Channing has his own plan for us.  Nonetheless, we would love to be home with him creating memories and watching him grow.  In due time he will be home and this current life we are living will be a thing of the past.  Vanessa and I talk about our future home life with him.  It makes us cry tears of joy of what our new life in his permanent residence will be.  Though an expected date for him to come home has not been discussed by his care team howbeit, we are more than half way to getting the eviction notice of our 2nd home, the NICU.

Channing’s care team at his bedside 24/7, the NICU nurses, have been slowly figuring out his increased needs this past week.  A juggling act of feeding and filling him for the next dialysis run has been tried, and it seems to be working.  Though some of the MD’s/residence have a hard time getting their heads out of a book and only seeing black and white, a few nurses provided a patient centered plan for Channing. The nurses know him best. Currently He receives 52 mL, close to 2 ounces of fortified breast milk every three hours.  The plan put forth this past Wednesday was to split up that 52 mL into two separate feeds within a 3 hour block.  Currently, he feeds every three hours at 9-12-3-6 and so on, drains his dialysis fluid at 45 after the hour for ten minutes, and fills for five minutes or when the prescribed fill amount is in.  Split feeding is started an hour or so before his actual feed time and before a drain of dialysis fluid and it has done wonders the past few days.  He is more consolable where before he was so hungry and upset he didn’t want to feed from the bottle.  Good job on the nurses that cued on his specific needs.  Aside from his feeds, the fill of his dialysis fluid has increased twice this week, 60 mL on Wednesday and a change today, Sunday was made for an increase to 65 mL.  As I am writing this he is dwelling with the first pass of the 65 mL and is tolerating it well while feeding.  This kid impresses us on a daily basis.

Additionally, the nurses have been showing us how to perform dressing changes on his peritoneal dialysis catheter as well as his broviac line.  We think this is a great learning experience for the both of us, it also helps build a solid relationship with his nursing staff as well.  With that being said, when the day comes and our eviction notice is presented we will both probably cry tears of happiness and of sadness.  As we will be elated for Channing to move out of the NICU to a step down unit then finally home.  We will however, be saddened to leave our amazing nurses that we have gained the most trust in as well as formed strongest of friendships. We are not there yet as we have some time left in the NICU, however we know that big day will come.  In the meantime, we will keep building our relationships with his care team into possible life long friendships.

Fill me up buttercup... we are at the half way mark.

It has been nearly 7 weeks here in the NICU, we have to say it is amazing how some of the nursing staff have become part of the family.  They are truely a unique gift to us and Channing, they are so much appreciated and treasured.  They have made our ride with Channing much smoother and less taxing as they help to treat Channing as well as us here during our daily visits in the NICU.  Currently, we have the pleasure of plant-sitting for a nurse that is on vacation.  Vanessa kindly took in the nurses plants to return the favor for taking such good care of Channing.  Though the task of taking care of plants is less cumbersome than Channing’s needs, we are still tweaking the right amount of sunlight and water requirements for the plants.  Upon our nurses arrival from vacation, we hope for a safe discharge from our home back to hers.  A detailed report to follow.

We apologize for the delay of usual posts, however we have been graciously taking time with extended family visits while watching Channing grow and experience his daily life in the NICU.  Channing has experienced a few changes since our last post. For one, he has grown a bit and is over 7 pounds.  This has made the care team increase his feeds concurrently; he is now on a 52 mL feed every three hours.  Of the 52 mL he takes 25-35 mL of it from the bottle and is now getting the rest by gravity feed through his NG tube.  The amount he is taking from the bottle is very good considering his fills went up as well.  The last post I mentioned he was not tolerating the increase to 50 mL dialysis fill, the nephrologist backed the fill to 45 mL on 31st to ease Channing’s comfort.  This last Thursday, the 3rd of January, the fills went back up to 50 mL and he is tolerating it much better than the last attempt at the same increase. Dwell time of the 50 mL is still 45 minutes as he pulls anywhere from 4-15 mL each pass.  When the change to the 50 mL fill was made the the dialysate sugar concentration was a mix of 1.5 and 2.5 percent dextrose.  This was all and well for a few days, then Channing lost 30 grams over night and also looked dry.  A change to a 1.5 percent dextrose concentration was ordered yesterday, Channing is doing well with alteration of this fluid.  Going forward, even at home, this will be the norm.

The hernias mentioned in my previous post are continually evaluated and will be treated accordingly when and if they progress.  

His iron and epogen dosages have gone up due to his growth and anemia.  

His electrolytes are managed every 48 hours and are adjusted accordingly.  His feeds are always fortified with the kcal and various sodium concentrates.  

Days are still long for Vanessa and I however, every day Channing teaches his parents something new which helps us get through one day and look forward to the next.

We are at the half way mark, 50 mL, to the 100 mL fill volume the auto dialysis cycler works on; which we will go home with in the near future.  We are also slowly learning how to bathe him and change his dressings around his broviac and dialysis catheter....always remembering this is a marathon not a sprint.  Take care all!



Paving new "Rhoads"

After numerous times of pressing the snooze button on my phone, I finally woke up to greet the sunny day today.  Before putting my phone down, I clicked on my "notes" app and opened up an old note titled "Our Amazing Gift."   I am not sure what drove me to open this random note that is way below many others, but I did.  This note was excitededly started after Vanessa and I found out we were pregnant last spring.  I made notes of exciting milestones that were occurring as we grew more confident about our positive pregnancy.  Milestones included the date of the positive pregnancy test, the ultrasound at 7 weeks to REALLY confirm it, and the fetal nuchal translusency exam at 11 weeks as well as a few other random notes about our exciting new journey.  I am not sure what drove me to jot these down as these moments at the time, were being cemented in my memory bank.  Maybe it was for this current moment,  to reflect what was then and what is now. These pre-blog notes eventually stopped in August as the road we were on changed and had to learn to pave new "Rhoads." 

Today nephrology increased his dialysate to 50 mL, a 5 mL jump from the day before.  This may not sound like much, but it is a lot on a tiny belly.  He seemed to tolerate it well until later today.  After his 3 pm feeding which he took mostly from the bottle, he indroduced us to a new voice, a high pitch screeching cry.  He was inconsolable for some time until we rocked him a certain way to settle him down.  To comfort him in the mean time, the nurse gave him Tylenol which was cleared by the NICU team previously for as needed dosing.  Leaving the hospital night we expressed to the nurse that we were concerned that the increase in fill volume was a little rushed; the nurse agreed.  For Channing to tolerate the increased volume, he should not have to be given Tylenol to tolerate it.  We hope nephrology can learn from this and clinically watch him the next few days to see if he improves with the fill volume.  The percentage of the dextrose was kept the same, 2.5 percent, as the fill increased.  Channing still has a good output of "urine."  

Another thing that "popped" up last night after we left.  Our nurse noticed a small hernia in is left lower abdomen.  She gently pressed on it to get an idea of what it was and possibly the severity of it.  It essentially disappeared for the time being, however the area will be carefully watched in the future.  Peritoneal dialysis can create hernia’s due to constant pressure in the abdominal cavity.  With treating his disease, many other health conditions may pop up, but we’ll address them IF we come across them.  Moreover, he will have blood tests next week to evaluate his thyroid treatment.

Hanging out with his Uncle Vic.

5 weeks and 2 kidneys short

Well it’s been a crazy fun filled 5 days away from the blogging machine.  We hope you all had a Merry Christmas.
Firstly, Channing invited his mom and dad over for a sleep over Christmas Eve night.  It was our first full night with our little man, and boy was it nice to be by his side at night while his nurses fed and changed his diaper so his parents could sleep.  Just kidding, we pulled our weight and took in some knowledge from the nurse with the most seniority in the NICU--40 years on the job!
Within the last 5 days, Channing experienced a few changes with his care.  His dialysate went up gently to a 40 mL volume which is up from 35 mL.  Moreover, the concentration of the solution was brought back down to 1.5 dextrose to slow the "pull" of fluid from him as to not dehydrate him.  This was the only change for that day since one change can make drastic changes to his hydration, electrolytes, and blood pressure.  A couple of days have past and a change to his intake (milk) was made today; a change from 44mL to 45.3 mL every three hours.  Vanessa and I were stunned by this peculiar change, 1.3mL!!? We asked the nurses why the super small amount of change to his feeds, both day and afternoon nurses stated they need to take the calculators away from the residents making this change.  We agree, a whole number of 45 or 46 would be perfectly fine.  A -0.3 or +0.7 mL additional feed won’t make or break our growing Superman.  On a more concreate common sense note, along with the change in feeds, Channing has been taking milk from the bottle with a high success rate.  Of the 45.3 mL (1.5 oz), he is drinking between 25 and 30 mL from the bottle and the rest is put on a pump over an hour via his NG tube. His feeds are still and will always be fortified with additional electrolytes as these are the most difficult to manage since he is on peritoneal dialysis/no kidneys. Occupational therapy came by today to evaluate his current feeding skills.  They pointed out different tips and tricks to help him possibly feed more from the bottle and voiced encouraging words to us new parents that he is doing very well with his feeds as it currently stands.
He is still getting labs drawn every 48 hours to check those electrolytes as I mentioned above.  Tweaks are made every time the results come back.  It is amazing how quickly the care team can make a change to Channing’s specific needs.
Another diagnosis followed today was that he now has hypothyroidism. In short, the brain is sending signals to his thyroid at a high level and his thyroid is not responding to the signals signifying his thyroid is underactive.  It is painlessly treatable with a medication called Synthroid.  Treatment is easily adjusted following routine blood draws that test Thyroid Stimulating Hormone (TSH) and T4 levels.  The diagnosis is puzzling as Channing’s heel stick test as a neonate resulted in normal function of the thyroid.  My investigative skills are to ask nephrology or NICU team if this condition commonly occurs in kids experiencing end stage renal disease, like Channing’s case.
Nephrology and NICU teams have stated they are very pleased with Channing’s response to treatments and hope he continues to stay on this track.  Now adding Endocrinology for the thyroid issue, he is becoming a very popular guy.
Vanessa and I still continue to find a balance of work, time with Channing, and normal home life.  We’ll get there as the the support around us grows, it helps in unbelievable ways.
A few great moments of the past few days.

Five week family photo.

Preparing for Christmas

Well, it’s the eve before Christmas Eve and all through the house is us stirring around to depart for Channing’s penthouse. His stocking is hung near his bassinet with care with hopes that Santa would soon be there.  His parents nestled all snug in his room on the couch-bed while visions of more milestones danced in their heads.

As Channing approached his actual due date today, he has experienced a few changes since our last post.  He has had some inconsolable nights, however his nursing staff and care team troubleshooted his needs.  They came to a conclusion that he may be experiencing reflux or discomfort due to a small increase in his dialysis fluid.  A change from 30mL (1 oz) to 35mL was made to hopefully achieve more output "urine," in his current dialysis process. In an attempt to treat this hypothesis, a decrease in his fluid (breast milk) was made.  He was receiving 47mL over a two hour period of time; first starting with bottle feeds then the rest through his NG tube. An hour of no feeds would follow for hopeful hunger pains to take a bottle the next feed.  He now takes 44mL with the same regiment and so far so good.  It is amazing a small change like that can do wonders on a tiny tummy.  Additionally, his feeds are still supplemented with sodium bicarbonate twice a day and sodium chloride every feed and since his feeds "dose" has been changed, Kcals are added to his feeds for additional calories as well... Wheew!  Just like daddy drinking his protien shakes, however his supplements claims are supported by the FDA and his daddy’s is probably just neskwik in a fancy bag promising to look like Arnold Schwarzenegger.
Channing has blood draws every 48 hours to check his electrolytes and blood gases.  Nephrology has stated that treatment with peritoneal dialysis is a moving target, however Vanessa and I believe they have hit the bullseye more often than not.

Channing has had some days with occupational therapy and physical therapy to keep him on track with developing motor movement.  SInce his peritoneal dialysis catheter is healing very will, OT got the approval from nephrology to try "tummy time."  With Vanessa’s eyes glued on Channing, he lifted his head, looked at his mama and turned his head.  This was a HUGE success!
We hope in time, he takes more or all feeds from the bottle and less from tube feeds.  However, this is usually a problem with the treatment for ARPKD and peritoneal dialysis; a continuous full feeling as I said in the previous post as I alluded to Thanksgiving dinner.
On that note, we are preparing for a home cooked with our amazing family for Christmas.  So as Channing’s mom and dad wake up in his NICU room Christmas morning, we hope our wish of growth and strength in the following days comes true.

We hope all of you supporting us and Channing have a Merry Christmas thank you for the support!!

Channing’s Christmas photo shoot with his favorite nurse and some other great moments follow....



Channing is 4 weeks today!

Going back to our meeting with a NICU Doctors a few months ago.  The attending physician said, "at one point or another, you as parents will state, this journey is a roller coaster."  At the time we did not deny the truth of their statement, but they were right. We are locked in for the ride that Channing is building for us.  Since we have hopped on "Channing’s Life of Fighting ARPKD" roller coaster, we have definitely had some steep climbs, heart wrenching down slopes, as well as some gental twists and turns, we fight to stay in good spirits.
He has tolerated his bolus feeds through his NG tube very well, even as they increase the amount.  Along with this he has done very well with taking a bottle to learn how to bottle feed.  Though it isn’t much, 10 - 15 mL which is roughly a tablespoon.  It may not seem like much, however it is monumental while treating this disease, especially with peritoneal dialysis.  Imagine if you sat down and ate all of what you could for Thanksgiving dinner, including the gizzard and that delicious dessert your spouse made... oh yeah and that fruit cake that grandma brought over.  You would feel absolutely full, as if you could not eat or drink anything else.  I apologize for the hyperbole, but this is essentially how Channing feels around the clock from his peritoneal dialysis treatment.  So, for him to take a bottle and feel hungry is a great thing--he loves his fruit cake.
His peritoneal dialysis fluid has remained at th 2.5% dextrose concentration with a 30mL (1oz) dwell for 45 minutes.  However, this will change possibly next week as the fluid may be adjusted a bit which will test his tolerance.  Though he hates his blood pressure being taken, especially his right arm, his pressure has remained low.  Due to his low blood pressure, he has not needed any medication to regulate it.  He keeps on amazing us with his daily progress.  Additionally, today he received his 2nd of 3 weekly doses of epogen to stimulate red blood cell formation.
Going back to work has been rough as all I can think about is being with him and Vanessa while they are "hangin’ out" in his room together.  I do however find time to get up there a few times a day to make my Dad presence known. If I am able to see him before Vanessa arrives to the hospital, I read him a book, and at times listen to the Dr.’s discuss his care needs and achievements as they round.
A few great moments today as Channing celebrated 4 weeks!