Vulnerable

I hate being vulnerable to my emotions.  I hate that I can’t control them.  But I’m also grateful for that I have no control over them.  I honestly can’t keep holding it all in.  It’s hard to talk about Edison.  I’ve been trying to be quiet and strong.  But talking about him and being vulnerable about him is something I need to do. 

I miss him.  So much. Apparently grief hits in waves or in times when you don’t expect.  I’ve been experiencing that.  The last week has been especially hard.  I don’t know why.  Maybe it’s because I’m starting to come out of this numbing phase.  Maybe because it’s all built up over the last two months.  Maybe it’s because Edison would have been 6 months old and entering my favorite baby age.  Maybe it’s because there’s a sweet little baby boy with HLHS fighting for his life and I know his parents are dealing with the most impossible decisions – I know they are praying and hoping (and hoping and hoping) for his hero heart to arrive because that’s his only chance. Maybe it’s because the holidays are coming up and I’ve totally become an introvert and building up walls over the last 4 months.  Maybe it’s because Grady is going to turn 4 in a couple of days and I never imagined he would be 4 years old with out a little brother or sister with us.  Maybe it’s because I’m about to turn 30 and life just hasn’t turned out the way I thought it would.  Maybe it’s because I feel like there’s a piece of me missing every second of everyday that’s completely consuming even in the happy moments.  Maybe it’s because sometimes I think it all has just been a bad dream and if I just turn the corner into the living room, he’ll still be sleeping away in his boppy pillow on our favorite chair…

We are never going to be able to get rid of that chair.

I read somewhere that healing from child loss comes with talking and sharing your child’s story and your story.  That makes sense to me. And since I’m bad about talking about it without totally crumbling into pieces, I think I’ll write about it…maybe.  It will probably be badly written, but it will be what it will be.

Edison's Obituary

Edison Dale Allen was born on May 1st of 2015 to two loving parents and two excited older brothers. Edison shared a middle name with his father and grandfather. His features were a blending of his two older brothers. Above all he loved being held closely while studying the people and the environment around him.

Our sweet Edison left this world on Tuesday, September 2nd at 4 months and a day of age to return to live with his Father in Heaven. He passed sweetly in the arms of his loving mother. His influence will continue to be felt by those he touched for years to come. His memory will forever bless the lives of his family. Edison's presence on Earth was a gift from a loving Heavenly Father.

Though Edison looked perfect on the outside, he harbored a very rare and complex set of congenital health conditions. After exhausting all medical options at Riley Hospital for Children in Indianapolis and consulting with institutions abroad, it was determined that Edison's set of conditions was unavoidably fatal. Edison spent the first two months of his life at Riley deftly capturing the hearts of a multitude of nurses and doctors. With heavy hearts, Edison was brought home to spend his remaining time with his family.

Edison's broken body was a poor reflection of his whole and beautiful spirit. His deep gaze and wide smile were soul-warming. While he was in our home he filled it with love and happiness. Edison inspired faith, gratitude and compassion in all those who interacted with him. His life's story brought together congregations and families in fasting and prayer. Edison was loved every day of his life and will forever be loved and remembered. We look forward to the day that we can be united with our sweet Edison in heaven as an eternal family.

In addition to his loving parents, Kyle and Kelly, Edison is survived by his brothers, Leon (6) and Grady (3) Grandparents, Gary and Carol Allen, Steve and Claudette Kirk, and Lisa Kirk.  Edison also has 10 Uncles and Aunts and 29 cousins.

In Lieu of flowers, we'd like friends and family to contribute to Riley Children's Foundation or to the Riley Cheer Guild in Edison's memory.

http://www.rileykids.org

http://www.cheerguild.org

The 2nd Hardest Thing

Everyday, at some point in the day, I go through all the questions and scenarios and "what if's" that we had the last two weeks of Edison's hospital stay.  I replay the discussions we had with the doctors and pleadings with God to help us know the right thing to do - to make it clear to us.  The answers did become clear, but I still go over it everyday.  It sucks to relive those things in my memory everyday; to requestion every detail everyday.

Do you know what the 2nd hardest thing is about bringing your baby home knowing he is going to die and there is absolutely nothing you or anyone else can do about it?  It is people questioning you as if we didn't think about or exhaust every realistic possibility.

Really people?  The hardest things I've ever done is accepting Edison is going to die and you are me questioning about it?

Sure, they are trying to help.  Sure, they are trying to solve the problem.  You know how you can help?

Kind words.

Support.

Prayers.

A freezer meal.



Support groups absolutely suck at this by the way.  They all have the answers...but won't answer the one question you actually ask.  Everyone's answer is "Call Boston!", "Call Stafford!", "Call CHOP!", and my personal favorite "Did you get a 2nd opinion?"

Please, by all means, if your child has a real chance of surviving, then do those things.  But sometimes it's not about the biggest and the best hospital.  Sometimes it comes down to the quality of life for a child.  I (and our doctors) haven't found a single successful case for a child with HLHS and BA.  And that doesn't even include a child, like Edison, who has severe heterotaxy and a very complicated vascular system.  Sometimes it's not about doing the risky surgery that only has a 10% chance of working.  Sometimes it's about letting your child pass away in loving arms and giving them some dignity.  Sometimes it's about not making them suffer anymore.  Sometimes it's about not letting their little bodies go through more trauma than it has already endured.  Sometimes it's about giving your child the best and most loving life that is possible even when it means that you will walk around for the rest of your life with a broken heart.

It's not easy.  Don't question it.  They thought about everything.  Please, just don't.

Blessing Day and 3 Month Birthday

On August 1st, Edison was blessed in our home by Kyle. Then we enjoyed a wonderful evening with our family as we had a 3 month birthday celebration for Edison with lots of fun, food, and love.  We ordered a ton of cupcakes, lit a birthday candle, sang Happy Birthday to Edison, and Grady helped blow it out.  It was so special.  I'm so glad we did it.  

For those of you who may not know what a LDS baby blessings is, it is a special prayer given by the father (typically) for a baby after he or she is born.  It is a special event for the family.  We were so happy to share it with so many of our family members.  As you may imagine, it was a very tender day for us.  Kyle's blessings was perfect for Edison and the situation.  It concentrated on Edison knowing how much he is loved in this life and for eternity and how he will make an ever lasting impact after he is gone to those who have loved him.  

 

 

I'm grateful that we are finding ways to make memories with Edison such as these.  Those moments are filled with much joy for our little guy and the time we have with him.  We are certainly trying to make the most of them, but it is incredibly hard sometimes.  We are constantly reminded how short our days with him on earth are, especially on days when he's not doing as well which are starting to come more fruequently.  But days like this day will be so important and sweet to us as we look back after he is gone.

Update on Edison

Edison is currently doing okay.  Last week, he had follow ups with the hepatologists (his liver doctor) and the cardiologists.  These appointments are helpful but feel a little strange.  These doctors are used to solving their patients problems.  Now, they are just seeing how things are looking and if there are any indications of things getting worse.  Edison’s heart is looking decent still, but he has developed a heart arrhythmia.  His doctor started to say “we’ll talk about putting a pacemaker in during…” but then remembered Edison’s situation and corrected herself.  She’s a great doctor and didn’t mean to be insensitive.  I know she’s going to do all that she can to keep Edison heart as healthy as possible for as long as possible.  We’ll see her in another couple of weeks.  At the hepatologist’s office, we talked more about what to expect from the liver side of things.  Liver failure is not pretty.  She checked Edison out and said that he’s not showing any major visible signs of failure yet (other than being jaundiced).  We talked about doing lab work to see how bad his liver is at this point, but we both decided it would be best to just keep Edison comfortable and not do anymore poking.  It’s not like we can do anything to change it.  We’ll only see her again if we change our mind about the lab work or if we just want her to check him out again.

Edison has gained about a pound and half.  He is now 8 lbs 14 oz.  I know that's not much for a 3 month old but I am pretty happy about this.  It's hard for babies with biliary atresia to absorb fats.  He has to use a special formula that already has the fats broken down so his body can absorb it and then we fortify it with extra calories. 

Edison has had a little bit of a set back the last few days.  He’s been having a hard time with feedings.  He gets his feedings through a feeding tube in his stomach.  Ever since his liver surgery, he hasn’t done as well with feedings but now its been getting worse. We think he is having trouble digesting the formula fast enough.  He gets very full and uncomfortable and sometimes gags and spits up.  It’s bad when he gags because his heart rate drops significantly.  He was been leaking formula around his gtube because he is so full.  He was eating every 3 hours for an hour.  Last night we talked to the palliative doctor and she told us to go to continuous feeds.  This means he is always hooked up to the feeding pump.  He gets the same amount of volume but it’s spread out over a 3-hour period of time.  It’s helped a lot.  He isn’t leaking and he seems to be more comfortable.  But it also sucks.  He’s always hooked up.  It makes it hard for us to move around the house with him.  He’s confined to wherever the feeding pump is.  He’ll rarely be able to leave the house.  I’m really hoping we can get to the point where we can condense them again even by just a little, but there’s a good chance that won’t happen.  The other bad thing is that not tolerating feedings is one of the first indications that things may be getting worse.

Edison sleeps a lot, but not always very soundly. He coughs/chokes and it causes him to wake up.  The cough/choking is probably caused by reflux.  Edison doesn’t have much of a swallow reflex due to being sedated and intubated for so long after his heart and liver surgeries, so he chokes on anything going down or coming up. 

He is very behind developmentally.  He still isn’t smiling much.  It takes a lot of work to get even a little smile.  His neck support is still similar to a newborns, but we are working on it.

I guess that the one “good” thing about all of this is that I don’t need to have high expectations for Edison.  I just have to hope he is comfortable and feeling loved.   I pray everyday for him to know he is so loved.  He always will be.

Edison did have his first trip to the park with his two big brothers.  He slept the whole time but it felt so good to be out of the house with him and have all three of the boys at the park together.  I sat in the swing with him while the other two ran around.  He also had his first outing to the library.  It was quick.  We needed to stock up on books for Leon and movies.  I was worried about germs.  When we got home, I probably washed by hands 5 times and then added hand sanitizer on top of that.  As a family we went through the new Indianapolis LDS temple open house.  We are LDS (aka Mormon) ourselves so it was pretty special for us in many ways.  The new temple is absolutely beautiful.  I look forward to the day when I can go and reflect on God's plan for us and perhaps feel closer to heaven and therefore Edison.

Edison's Brothers

Before we left the hospital, I talked a LOT to the child life specialist and the palliative care team on how to prepare our other two sons for this situation.  They made a lot of great suggestions and gave us a lot of advice on how to handle things.  They advised us to just tell the boys that Edison is very sick and let things play off that statement.  If they have questions then we'll answer them honestly, but so far there hasn't been many.  We want them to have some normalcy and to enjoy this time being big brothers and getting to know their baby brother.  The last thing we want is for them to anticipate Edison's death or be scared of the situation.  It's important to us that they have a relationship with him that's free of worry.  When Edison starts getting worse, we will tell them.

Leon (6 years old) is wonderful with Edison.  He is really sweet to Edison.  He loves to help and tries to make Edison happy.  He’ll go up to Edison when he’s crying, stick his paci back in his mouth, and say “it’s okay Edison!” in a baby voice.  Its incredibly endearing.  Leon also reads to Edison during reading time sometimes.  Edison just watches him.

I was telling Leon that babies really like pictures in black and white.  Leon later returned with his black and white Legos to show Edison and started to build him something to look at.  Leon also helps me sing "I'm a Child of God" to Edison when he is upset.  It's one of our favorite songs.

This was Leon's first time holding Edison.  He was so proud.  It made my heart swell.

Grady (3 years old and has autism) loves Edison.  He has moments of jealousy but overall has really done well with the transition into big brotherhood.  He gives Edison kisses.  He goes up and says "hi baby brother" or "it's okay Edison".  His autism and age has made it harder for him to bond with Edison but I can see love and wonder there.  Sometimes I see Grady standing next to Edison, just  watching him.  I've always loved seeing how Grady is developing and progressing.  Seeing him take in his little brother makes me realize that Grady is such a special spirit.

Leon has talked about "when Edison gets big" many times.  He's asked when we'll get to go with Edison to Disney World.  He talks about when Edison will start crawling and walking.  There are many times a day I wish to tell him what's going on.  I want him to realize how special this time is.  I desperately want them to bond.  But I remember he is a 6 years old and I always go back to believing our plan to wait is what's right.  

I've watched Kyle and the boys play in the yard several times while I've held Edison in my arms.  Leon and Grady are so happy to have us all home and have some "normalcy" again in our lives.  In those moments I imagine a toddler Edison trotting along with them - maybe a little more out of breath from his heart condition - but playing and happy and trying to be big like his brothers.  But reality sets in and grief hits.  I realize that he won't be there.  It's not going to be like that.  It's hard not to imagine him in our lives.  Edison is apart of us now.

(photo credits for images 4, 5, 6 - kim davis photography)

Bringing Edison Home

We welcomed Edison into the world on May 1^st of 2015.  At that time we already knew that he had a couple of rare medical conditions: hypoplastic left heart syndrome (HLHS) and heterotaxy.  If left untreated, HLHS would be fatal within 24 to 48 hours.  The extent of the heterotaxy was unknown, and potentially benign, but still concerning.  While HLHS occurs in roughly 1 in every 5000 births, heterotaxy only occurs in about 1 in every 250,000 births; a very rare condition.  Being forewarned, Edison was delivered in close proximity to Riley Children’s Hospital in Indianapolis and was rushed there shortly after his birth to be stabilized and monitored in their specialized NICU.  There in the NICU he would await his first of 3 highly invasive surgeries to treat his very serious heart condition.  Though Edison could potentially lead a normal life after the 3 surgeries he would always be limited from a cardiac standpoint.  The only alternative to the 3 surgeries was a heart transplant.

Edison experienced his first HLHS surgery (the Norwood procedure) at 10 days old.  Despite his severely complex heart anatomy (even more so than typical HLHS babies due to the heterotaxy), the surgery went really well.  After the procedure the surgeon explained that he had only seen 3 other cases  (out of hundreds) that had cardiac anatomy similar to our son’s.  Nothing about him or the procedure was routine.  It took Edison some time, but he pulled through like a champ and before we knew it they were starting to wean him off the ventilator in preparation to be extubated.  Around that time the doctors started to notice that he was looking jaundiced and his bilirubin (liver bile) counts were a little high.  They kept their eyes on it over the next few days until the counts continued to elevate and were more concerning.  They ordered a scan to see if the bile created in the liver was passing through to the intestines.  The scan showed that it was not, so they ordered a liver biopsy to confirm what the scan had shown.  It did.  Edison was then officially diagnosed with biliary atresia.    

Biliary atresia (BA) is a condition where the liver’s bile ducts are obstructed, not allowing bile to pass from the liver to the intestines.  When bile builds up in the body it causes jaundice.  If bile can’t exit the liver over an extended period of time cirrhosis sets in, ultimately leading to liver failure.  BA has one surgical treatment alternative to transplant, though the procedure is really just meant to buy time until a transplant is required.  Transplant is almost always eventually necessary to correct BA.  In the surgery, referred to as the Kasai procedure, the damaged bile ducts are removed and a portion of intestine is attached directly to the liver.  If effective (only about 50% of the time), bile flow is restored at least temporarily.  The hope is that it would allow Edison to get older, bigger and healthier before undergoing a liver transplant.  That was our understanding at the time.

During all of the BA testing, Edison’s little corrected heart was ticking like a vintage timepiece.  He was extubated and making steady and impressive progress towards being free of hospital care.  At five weeks the attending CVICU doctor told us that if it were not for the liver issue, we would have been be going home.  Instead we found ourselves in the surgery waiting room praying our Edison would make it though another surgery. 

Four hours into the surgery the rounding nurse invited us to speak with his surgeon in one of the consultation rooms in the hallway – typically reserved for the delivery of bad news.  Edison’s surgeon and hepatologist entered the room and explained that they were not able to do the Kasai due to a malformation of arteries and veins (an AVM) that had formed on the portal plate of his liver, if his liver had a portal plate.  The AVM was in the exact place they needed to attach the tract of intestine to the liver.  Even if the portal plate did exist, there was no way to operate in the area without causing him to bleed out.  It was the first time in her thirty years of experience that the surgeon could not perform the Kasai.  They then told us that Edison was not a candidate for a liver transplant because he only had the first stage of the 3 heart surgeries.  At the time we were not expecting to hear that, understandably so, and the news was completely crushing.  In addition, they explained that they were not sure if he would ever be considered a candidate for a transplant because of the complexity of his anatomy and collection of medical conditions. 

We were heart broken.  Riley made it clear that they could no longer do anything for him.  With the help of our doctors we spent the next two weeks seeking potential alternatives and second opinions.  We thought of every possible scenario and question. We reached out to Lurie Children’s in Chicago and Cincinnati Children’s.  In both cases we provided medical records to elicit potential treatment plans.  Neither institution had answers for us or anyway to help.  Our surgeon reached out to a network of BA specialists (of whom she was one).  No one had seen such a case.  Eventually we began to see the reality of the situation – how very rare and very final it was that Edison had all three of these conditions.  Medically speaking, he had nothing in his corner.  We later understood that his liver bile ducts had never even formed.  His little body was engineered to fail.

Though thoroughly convinced of the inevitable, the urge to pursue a solution was strong.  It seemed that if we wanted to we could hop from hospital to hospital looking for some cowboy surgeon to take another shot at him. With the aid of caring physicians and prayer, we ultimately chose to bring him home with hospice care.  This way he could get to know his older brothers, his home and ultimately pass while swathed in love.

Some kids with BA can live to be about a year old before they need a liver transplant.  Edison’s vascular structure results in high blood pressure in his liver, something that the liver really does not like. This will likely cause cirrhosis to set in quicker.  The medical team did not really know how long he has, but they estimated that he has anywhere from 3-6 months, providing that his heart continues to do well.  Heart and liver conditions in conjunction can quickly lead to spiraling declines.

One of the hardest things right now is that he looks so whole – with the exception of his surgery scars and jaundiced appearance.  It is difficult to grasp that he could be so sick.  For all of modern medicine’s marvels, one would think (and ignorantly so) that there should be some clear solution.  Surely there will be at some point, but there isn’t now and that is what matters for Edison.  We had never thought since the beginning that it would be anything other than his heart that would be so life threatening, but here we are.

We are constantly finding comfort in our faith.  Friends and family have been immensely supportive and caring.  We have seen our prayers answered in so many ways that we cannot even begin to express.  We believe that families can be together forever as part of God’s plan for us.  We know we will be with Edison again someday after he passes.  We believe he is one of God’s special spirits who has been entrusted to us, even if for a short time.  While we wonder what our Father in Heaven intends Edison’s purpose on Earth to be, one thing for certain is that he was sent here to be part of our family and we have the perfect opportunity to love him.  For as long as we possibly can we will spend the days and weeks to come loving Edison.