What NOT to say to a grieving parent!!!!

This post has been a long time in the making for me. I know there are so many articles out there on what not to say to a grieving parent but I wanted to have a blog post on my site because it is so important to me to give my view on those things not to say.  I have joked with friends over the last few years that I was going to write a book on what not to say after someone loses a child, maybe I will in the future but for now I will leave it here on the blog for you to enjoy and share.  When it comes to loss of any kind, our society is so quick to try to gloss over it or quickly get to another subject, bc we are so uncomfortable with vulnerability and truly opening our heart to feel such pain.  I know that the phrases I will list, of what not to say, are not said to be hurtful.  If you have said them to someone, its ok……I have said a few myself to others before I experienced such loss.  Ok so here it goes.

“How are you? How are you feeling?”

This is a hard one for a grieving parent to answer and you will usually get the answer “okay”, only bc the way we truly feel is so jumbled and complicated, that we do not want to get into it or make you feel uncomfortable.  Also, some days we do not know how we are feeling from one minute to the next.

“Your so strong and Brave”

We do not feel strong nor brave.  We feel weak, broken, fragile, sad, and so much more, but strong is not even in our vocabulary.  We may seem strong to an outsider but we are merely enduring because we have to!!  We want to run away, crawl in a hole, cry until we can cry no more, and wake up to another reality.  We endure because we have responsibilities like families, other children, jobs, all that life entails before the loss of our child.  In my case, if I seem strong it is only because the Lord has literally carried me through each minute of each day and helped me complete the tasks I needed to complete for that day.

“I wouldn’t be able to live if I lost my child”

This one goes along with the previous one, but causes so much pain to hear this because you do not know how you would feel or what you could or could not do, unless you have been through it.  It also has the suggestion that you do not understand why we are still living or that maybe we should still be living since our child is not here anymore.  Believe me when I say that I want nothing more than to hold my son again, but I also know that my time here on earth with my other children and husband is not over yet.  God has plans for my remaining life, and I want to fulfill those plans and joyfully look forward to seeing Jude again, when it is my time.

“God wanted/needed him as an angel”

This one makes my blood boil…….please do not bring your theology into the grief of a parent.  God did not NEED my son.  My son did not die because God was lonely or needed help with heavenly duties.  I know people are not meaning any harm by this statement and honestly want to say the right thing but I feel like this is people’s polite way of putting blame on God.  The truth is, we live in a fallen world and terrible things happen to those that are the most innocent.

“I know how you feel”

Please to not compare your loss with that of another person, especially one who has lost a child.  Even though I have lost a child, I would never assume that I know how another grieving mother is feeling.  The loss is so unique to each individual.  The loss of your pet is nothing like the loss of someone’s child!!!   No matter what loss you have experienced, just steer clear of comparison.

“At Least….”

For those of you who know me, know that this one is usually my rant.  I can not tell you how many times I have been told….at least you have other children, at least you can have more children, at least you had 11 months with him, at least it happened fast, at least he didn’t suffer…..and the list goes on.  I would just encourage you that while you are around a grieving parent, take “at least” out of your vocabulary.  That phrase hits a nerve that brings a lot of pain to the one suffering.

“Be Thankful”

This one is a lot like the previous one (at least)…..just DONT!!!  Those who have lost a child are very thankful for the children they have because they have lost one, there is no need to tell them to be thankful.  It honestly is a slap in the face when we are told to be thankful because our thankful meter has just changed in a dramatic way, we live with one of our most precious children in Heaven.  If you want to use the word thankful, then simply tell them you are thankful for them and their child.

“Time heals all wounds”

This may be true for so many things but not the loss of a child. The sting may lessen as time passes and the blow may soften but that wound is always there.  Some suffering does not end in this lifetime and I believe this is one of those sufferings. NO, your wound will not always be gushing like in the beginning, and the bleeding may slow but that would will forever bleed.  This is one of those comments you do not want to hear when you are in the trenches of suffering, it is not comforting one bit.  You can just simply let that person know you are here for them and if there is any way you could help them carry their burden, you would like to.

“Move on…..Let it go….Start living again”

First of all, there is no letting go of anything in the area of child loss….we have already had to let go of the most important things in our lives…..OUR CHILD!!  This insinuates we need to “get over it”…..well that will never happen.  I will take Jude and his story everywhere I go for the remainder of my days.  I am living and moving forward but I will never move on.  This comment brings unnecessary pain to someone who is already hurting.

“Everything happens for a reason”

While this is well intentioned, by the people saying it, it is also very hurtful.  I may get some flack from this particular phrase but as a parent who has suffered child loss, there is not a good enough reason in this world that my child is not here with me.  For our situation, I can see some good that has come out of his death but I still would rather have him here too!!  This comment is just not needed, even if you believe that is comment is true…….sometimes there is a time that you just keep your mouth shut and give someone a hug.

Last but not least………..

“Have Faith”

“Trust God and your suffering will lessen” . Listen, I do trust God!!!  Just because I am heart-broken and grieving, does not mean I do not have faith.  People of faith still grieve!!!  I have felt so alone at times in this journey of child loss and my faith has been a key component of me being able to wake up every morning and continue living.  So when I am at my lowest of lows, telling me to “have faith” is a complete blow to my soul.  My suffering is my suffering and I will grieve and deal how I see fit, and all I need is your support.  Parents who have lost a child are probably already struggling internally with their faith and do not need any added pressure or guilt.

 

I hope this was helpful, and gives you some insight of how a grieving parent may be feeling.  All of this may not be true for every parent of child loss, because every situation is so unique and so is every person involved.  This is meant to be a general guide.  I have been blessed with friends who have said the RIGHT things and have helped me suffer well on my journey.  Here are a few comments that really ministered to my heart:

What would be helpful for you right now?

I am here for you

I am here no matter how painful, I will walk beside you or carry you if you need me to.

I am so sorry

It breaks my heart to see you suffering, I wish I could take your pain.

I miss Jude too, I wish he was here with us

What is your favorite memory?  What do you miss most?

Thank you so much for reading and allowing me to pour my heart out from this side of grief.  Thank you to all of those who have been there for me these last 4 years.  This journey SUCKS……seriously sucks.

 

Grief (1)

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Jaylie Joy’s Journey with PVS

 

I wanted to have a blog post soley devoted to Jaylie and her Pulmonary Vein Stenosis journey thus far.  Jaylie is 15 months old right now and started her journey with PVS at 8 days old. Because of the history we had with her brother Jude, we decided to have an echo on Jaylie for peace of mind.  Much to our horror and shock, at 8 days old her echo was preformed and showed she also had PVS!!  When we got that diagnosis that day, my husband and I thought for sure we would be losing yet another child to this disease because that is all we had known.  We did our research and called several doctors, desperately trying to find the right place to treat Jaylie.  PVS to the majority of the medical field is considered a death sentence and wont even try to treat your child.  Through a sweet mom and freind, we were put in touch with a doctor in Colorado who then directed us to a doc at Texas Children’s Hopital in Houston.  This genuinely nice doc was a God send for our Jaylie.  When Jaylie was 4 weeks old she was careflighted to Houston to be treated by this doctor.  Jaylie was honestly knocking on deaths door when she met Dr.J.  Without the heart cath and intervention, Jaylie would have only lived a few more weeks.  She had all 5 pulmonary veins narrowed with 2 completely occluded. (most of the time there are only 4 pulmonary veins but some people have 5) She was also having a battle with jaundice but after the first cath and having her veins opened up, it cleared up within a few days.  Here is a rundown of her 8 heart caths to date:

Cath 1:  4 weeks old– (5 drug eluding stents, one in each vein)

Cath 2: 8 weekd old– 5 more drug eluding stents, one in each vein to extend out past the end of the original 5 stents bc she had more narrowing right beyond the stents.

 

Cath 3:   3 months old– Ballooning of all 5 veins, she had narrowing inside the stents and a little beyond.  At this point we were given a choice:  start Jaylie on a drug called Sirolimus with the hopes that it would help keep the veins open and slow the growth of scar tissue build up or go down the path of lung transplant.  With much prayer we decided to try the Sirolimus but also do all the work up for lung transplant, just in case it ended up coming tp that.

 

 

Cath 4:  4 months old– This cath had to happen in somewhat of an emergent fashion so we did not have our normal cath dr and one of his partners treated Jaylie.  He used drug eluding balloons on all 5 veins.

 

 

Cath 5:  5.5 months old– Ballooned all 5 and put an additonal stent in 1 vein.  She needed a blood transfusion this time around.  After this cath, she started on an iron supplement once a day.

 

Cath 6:  8.5 months old–  Ballooned all 5 and made the stents bigger.

 

Cath 7:  11.5 months old–  Ballooned all 5 and made the stents bigget.

 

Cath 8:  14.5 months old– NO intervention needed!!!!  Some slight narrowing but not enough to intervene this time.  WOW!!  This was a shock and a huge blessing, thank you Lord.  Right after this cath she got her first Mehta Cast for scoliosis.  This is another part of Jaylie’s journey I will be blogging about a little later.


With each cath in the beginning, she always had narrowing just beyond the stents but not in the stents.  After we started the Sirolimus the narrowing stopped beyond the stents and only narrowed within the stents.  Our Dr’s belief is that the Sirolimus is controlling the progression of the narrowing to a certain degree.  She does have narrowing within the stents each cath but that is something that can be addressed with ballooning.  We have HOPE!!!  This is not something we had much of when she first got her diagnosis.  We praise God daily for Jaylie’s life and how He orchestrated every detail to get her to where she is now.  PVS is so unpredictable and we know this, but we also know we serve a mighty God who has given us more time with Jaylie than we had with Jude or even dreamed of having with her.  We were privileged to celebrate her first birthday, that in and of itself is a miracle.  God is still in the miracle working business and our baby girl is living proof!!

My hope with this blog post is to tell our story with PVS in hopes that it will one day help another family that is researching how to treat thier child.  Our daughter is our hero and she is kicking some PVS booty!!  Her story is far from over but this is her story to date.

Update:

Cath #9:  17 mo old—enlarged all stents a little and dilated some narrowing.  Her RV pressure was 39….this is the lowest it has ever been!!  The cardiologist was so pleased and surprised. Jaylies 2nd Mehta cast was placed after the heart cath.  She will have another cathertization in 6 months.  She is also still taking the Sirolimus daily.

Cath #10: 24 months old—enlarged all stents and 3 of the stents were cracked open, bc they had hit their max size in diameter.  2 of the cracked stents stayed open but one had to have a regular bare metal stent placed inside it to keep it open.  Her RV pressure is still holding steady at 39!!!  She did have some tissue build up in all the stents.  After this cath, she had her 4th Mehta cast put on.

 

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UPDATE:

Cath #11:  2 years and 8 months old– 6th cast

Cath #12: 8th cast . intervention on only the left lower vein, cracked stent and enlarged vein.  the ballooning caused a psudo anyerism so a stent could not be placed at this time.

cath #13: no cast, follow up from cath #12 to put a stent in Left lower vein.

That Damn High Chair

Odd title, huh?  Well you will soon understand the meaning behind this title.  After we lost Jude, friends and family put Jude’s things away before we got home.  Toys, car seat, high chair, baby bottles…..pretty much all that would remind us of Jude when we would walk through the doors of our home.  I don’t know if this was the right thing for them to do or not, but I do know they were trying to ease our hurt and all they did came out of love.  Over the last 3.5 years, I have slowly gone through his things and dispersed them to others.  The pain that comes along with going through you dead baby’s belongings is beyond the expression of words.  Each step of this journey in child loss has been so hard, gut wrenching, and heart breaking.  I had one last thing I had not dealt with and dreaded even looking at it……THE HIGH CHAIR!!  It was put up in our attic, by I do not know who and there it has stayed to collect dust.  That high chair was the last place Jude sat in this house, a happy, “healthy”, normal baby boy.  That damn high chair is what set off the string of events that led to his death.  I accidentally pinched his finger with that highchair, and that is the moment our life took a jackknife, out of control turn.  We had know idea how sick our baby boy was, until he had his little finger pinched and he took in a deep breath to cry out in pain and quit breathing.  His PVS and Pulmonary Hypertension were so bad that he did not have any reserve in his little lungs to handle a cry like the one he tried to have, after his finger was pinched.  So this high chair that I had in my attic, looming over my head, has often haunted my thoughts many times over the years.  Over the weekend, I decided it was time to face my fear of that highchair and the emotions I knew would come with it.  Thank you Lord for giving me the strength to continue down this awful journey called child loss.  I took that high chair down from the attic and tears welled up in my eyes the moment I saw it.  The memory flood gates opened of that terrible day, as I knew they would…I was ready and I had given myself a pep talk.  I allowed myself to go down memory lane and I cried A LOT!!  I then began to remember all the good times Jude had in that highchair, that is where he learned to eat and where he would sit and watch his crazy big brothers run around.  He would also get pushed around the house by his brothers, while in the high chair (it had wheels).  He watched many Mickey Mouse episodes in that highchair.

I began to clean the high chair up so we could pass it along.  It still had food in the seat….stale cheerios, smashed blueberries (i think), and so many crumbs.  These were some of the last foods Jude ate in our home and in this high chair.  I know all of this talk may sound odd to some of you, but those that have lost a child will relate!!  As I wiped the chair down and washed the seat cover, I cried…..I could barely see through my tears.  The boys came through the family room and saw the chair and saw me crying.  They both came and gave me a hug and sat on the floor and watched.  They did not know we still had the highchair.  They were so sweet to ask questions and just sit with me while I cleaned it…..they knew mamma was sad and hurting.  All this to say, THE HIGH CHAIR is no longer in our home….it is sad but it is also a relief to have faced it and dealt with that part of this journey.  It was the last of Jude’s things and it was hard to let go of but it was necessary for this mamma.  Here is a picture of the high chair and Jude in it:

Jaylie’s Scoliosis Journey

Jaylie has progressive infantile scoliosis.  Progressive infantile scoliosis is traditionally defined as a lateral curvature of the spine with vertebral rotation diagnosed within the first three years of life, twice as common in males.  Left untreated it can be fatal. 80% of cases are idiopathic (unknown reason/born with it). Jaylie falls into this 80%, just like her PVS is idopathic, so is her scoliosis.  We first recognized her curve around 3 months old.  We brought it up to the pediatrician at that time but he was not too concerned bc she was so young and we had much bigger issues going on with her PVS. (to know more about her PVS, please see previous blog posts)

Once she was more stable, I brought it back up to the pediatrician around 9 months of age bc it was definatly more pronounced and obvious.  We then took her to an pediatric orthopedic, after x rays and examination it was determined that she had scoliosis.  At 9 months, her curve was 32 degrees.  The dr recommended that we wait and see what the curve does once she is bearing weight and standing.  We went back at 12 months old and took standing x rays, her curve was worse.  It was now at 40 degrees.  Casting was talked about briefly at this appointment.  I went home from that appointment a bit discouraged and sad for my baby girl.  I decided to do as much research as possible to learn more about this condition and the treatments.  This is when I found the Infantile Scoliosis Outreach Program  www.infantilescoliosis.org     This website and group was so informative and supportive.  They pointed me to the Early Onset Scoliosis and Mehta Casting facebook group, this is where I got so many of my questions answered by fellow moms and family members of scoli kids.  I quicly learned there were major differences in casting technquies for scoliosis and I decided that for Jaylie, we would proceed down the road of Mehta casting.

What is Mehta casting?  Mehta Growth Guidance Casting is the only conservative, gentle, and noninvasive treatment for progressive infantile scoliosis. It was developed by a british orthopedic surgeon, Dr. Min. H. Mehta.  She called it EDF casting (elongation, derotation, flexion), which has now evolved into Mehta casting.  Her findings showed that a childs rapid growth guided by EDF casting can allow curved spines to grow straight.  This treatment protocol is a series of plaster casts, applied under anesthesia every 8-16 weeks, until the curves measured under 10 degrees.

The Mehta method requires a specialized casting frame that allows a gentle untwisting of the spinal curve. Before the Mehta method, Risser casting was the method used in the US to treat scoliosis.  This method only addressed two demensions (elongation and derotation).  Now with the Mehta method, flexion is addressed.

****During the first 2 years of life, on average a child can be expected to grow, on average, 24 centimeteres……..This is why Early Detection and Early Treatment is important, and can dramatically lessen the number of  casts required and the total time a child spends in casts****
Here are some pictures of Jaylies back/spine before casting started:


  

  

As you look at these pictures, notice her rib hump on the left side.  Rib humps are classic symptoms of scoliosis.  You can also see how here spine is not aligned straight down her back.  Some of you may not see much at all, this is why it is missed bc you have to know what to look for…….Please ask your pediatrician to do a scoli check on your child!!!

Jaylie finally started the Mehta casting journey April 28th…just shy of of 14 months old.  We took some time deciding on where to get her casted and with what dr, because her heart condition threw a few obsticales in the deciding process.   Here are some pictures of her getting her first cast and the cast in action:


  
  
  
She has now been in her first cast for almost 11 weeks, as I am writing this post.   She will be getting it switched out in a few weeks. It definatly  took some time to adjust to for her and us.  She had started walking just a few weeks before the cast, so as you can imagine the cast really threw off her balance.  She was constantly falling and bumping her head, so we took the suggestion of other mammas and got her this little soft helmet:


We called her toadstool when she wore it 🙂  This seriously gave her more confidence and security in walking around and gave us some peace of mind.  I can not wait to see how her back looks in a few weeks when she gets the cast off. I will post pictures.  She will have a 5 day break between casts and we are going to go swimming as much as possible and basically live in the bathtub….LOL.

CAST BREAK #1


Cast #2:

CAST BREAK #2:

 

 

 

Cast #3: 20 months old—-

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Pulmonary Vein Stenosis

My hope for this blog post is to get it to as many people as possible so that when someone googles or searches for PVS, this blog post will pop up for them to read.  I ask you to please share this post with as many as you can, after you read it!!

What is Pulmonary Vein Stenosis? (PVS)    Pulmonary vein stenosis is a rare and serious condition in which there is an obstruction (blockage) in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. It can be isolated to a single pulmonary vein, but most often occurs in multiple veins simultaneously.  Most people have 4 pulmonary veins but some people can have 5.

Here is a simple overview of the Pulmonary Veins:

 

In Pulmonary Vein Stenosis the veins grow extra tissue that clog up the vein openings, thus creating a stenosis/narrowing of the vein.  This in turn causes blood to back up into the lungs and cause higher blood pressure in the lungs, called Pulmonary Hypertension.  The narrowing needs to be opened up to relieve that pressure build up so the lungs and the heart do not have to work so hard to pump the blood through the pulmonary veins and out into the body.

A child can have pulmonary vein stenosis for many reasons.  It could be connected to another heart defect, it can be acquired after having heart surgery for another defect, it can also be congenital/ideopathic.  The latter just means that the child has no other heart defects and has pulmonary vein stenosis primarily.  PVS is so rare and so unique to each child and that makes it hard to compare cases and treatments.

Treatments for PVS:

Ballooning (angioplasty)

Stenting (bare metal or drug eluding) — The drug eluding stents have everolimus on them that helps the vein stay open and slows the production of tissue growth.

Sutureless surgical repair — (open-heart surgery to widen the narrowed veins and improve blood flow from the lungs back to the heart)

Avastin/Gleevac (chemo drugs that help keep the veins open)

Lung transplant

 

The ballooning and stenting are usually short lived and temporary fixes.  The veins do not like to be messed with,  frequent heart catheterizations are needed to continue to keep the veins open and grwoing with the child.  This is a complex condition and still has a grave outcome but there are a few hospitals that are inventive and think outside the box in treating PVS.  Texas Childrens in Houston is treating our daughter and has done an amazing job, totally saved her life!!  Dr. Justino is a genuinely caring doctor and he is not afraid to try things to save a childs life.  Boston Childrens is another facility that has a PVS program.  They tend to be a little more invasive and have a different approach than Texas Childrens but both places put thier blood, sweat, and tears into fighting this disease!!  If your child has this diagnosis, please do your research and arm yourself with knowledge.  There are options for this disease, you just have to be willing to go other places to get treatment.  Most hospitals and doctors do not even know much about PVS, thus they do not know how to treat it.  PVS to most doctors is considered a death sentence, please go to someone who deals with PVS and has treated many cases.  You are your childs best advocate!!  Knowledge is POWER!!!

 

This crazy thing called GRIEF.

Oh that word….grief….such a small word with huge implications on ones life.  When I looked up the definition of grief, it started out by stating that grief is a multifaceted response to loss.  I think that is a perfect way to start the definition bc there are so many facets to the grief response.  I have approached and passed the 3rd year anniversary of the loss of my son.  As I reflect on the last 3 years, I have realized how my grief response has shaped me, carried me and changed over the last 3 years.  Grief is not just a emotional response, it also has physical, behavioral, cognitive, social, and philosophical facets.

One thing I noticed is some things and places that brought so many tears and so much pain, have now become a source of comfort admist the pain.  The Lord has a funny way of bringing you to the crossroads of dealing with pain and loss but comforting you at the same time.  After we lost Jude, I thought there would be no way I could revisit the local children’s hospital ever again.  That place was tied to so many painful and sad memories, after all it was the place I left my baby boy laying in an ICU bed and had to walk away and never bring him home again. Ugh!!!  Talk about a deep pain like no other in this world.

The crazy thing about that children’s hospital is that it has become a source of comfort.  We have since been blessed with a baby girl who has the same condition her big brother passed away from. (Pulmonary Vein Stenosis).  With this diagnosis came a flood of emotions, and it also landed us right back at the local children’s hospital…..the place I thought I could never go back.  God has taken that dreadful place from a place of pain to a place of comfort and peace.  Not only did that hospital act as a vessel to get our baby girl where she needed to go to save her life, it has been a place we have had to go to monthly if not weekly for blood work over the last 7 months.  God has forced me to face my pain and see that pain through different eyes.  With each visit for our baby girl, the drive and the walk up to that hospital got easier and easier. I had time to walk thru the hospital and remember different things that took place in many areas of the hospital.  I strangely felt so close to my son, Jude, while I was there.  I guess it was the last place I saw him, the last place I held him, and the last place I kissed those soft cheeks.  It was the place I handed him back to his creator.  When I am there with Jaylie, his baby sister….I just feel like I have my two babies together in a place that has helped and is helping my children.  I know Jude is not actually in the hospital, I am not a crazy person 🙂 but there is a comfort and peace when I walk into that building I feel like it is God and Jude’s presence.  It is really cool to see how God has taken such a painful experience and turned it into something good….only God can do something so amazing.

GRIEF is a crazy roller coaster ride but I trust the Lord and his plan for this ride. 

  
 

Jude Daniel Sawyer

I would like to introduce you to one of my heroes…..my son, Jude!  He was born on December 29, 2011. He was born at 36weeks and 5 days.  He had to come a little early because I had low amniotic fluid.  We were expecting him to go to the NICU because he was early but he surprised everyone when he came out pink, crying and as far as anyone could tell…healthy.

Jude,s newborn picture, 2weeks old
Jude’s newborn picture, 2weeks old

DSC_8405Oh the love of a mamma.

Jude's Newborn pictures.
Jude’s Newborn pictures.

Jude was a sweet baby who loved to smile and steal the attention of others with his contagious smile. He was a sweet tempered baby. He had red hair and green eyes, a beautiful baby boy.  At about 6.5 months of age, he began vomiting after feeds, not all feeds but some. I always noticed he breathed faster than my other babies and the babies we were around, but didn’t think much of it until he began vomiting.  My mommy gut was telling me something was going on, but I had no idea what it could be. He did get RSV at 4 weeks old and had to do breathing treatments for a while, and honestly after that is when I noticed his breathing was fast and it just never slowed to normal.  Looking back, I think the RSV really worked against his PVS (pulmonary vein stenosis)…..which we did not know he had. The RSV probably damaged his lungs a bit and made his heart and lungs work harder.  Like I said, at 6.5 months old he started to vomit after feeds.  He would get a little clammy and fussy, then vomit.  I brought this to my pediatrician’s attention and I am pretty sure they thought I was exaggerating when I said vomit, because you know after 2 kids I don’t know the difference between vomit and spit up :-).  We were also fighting ear infections with Jude, he had them often and we were nearing the time to go see an ENT about tubes. Summer of 2012 was crazy. We were selling our house and buying another.  Trying to keep a house clean for showings with 3 littles is not an easy task. September of 2012 we moved into our new house and got settled in.  The busy life was no problem for Jude, he just went with the flow and never complained. Looking back, I wish I would not have been so busy, maybe I would have picked up on more symptoms.  Hind sight is 20/20 right?  I firmly believe Jude’s life played out just the way God planned, eventhough the mommy in me wishes I could have done more.

 

Happy boy!!
Happy boy!!

We started taking Jude in to the pedi for weight checks because he was not gaining weight. He quit gaining weight around 7 months old.  From 7-11 months old he did not gain weight….another red flag!!  His vomiting progressed, from after feeds to any time he got upset.  Diaper changes were not his favorite and he started to protest diaper changes.  We had to be quick or he would get upset, get clammy, have color changes around his lips, and then vomit.  As soon as he would vomit, it’s like he was relieved and instantly felt better.  I went to our pedi again, explaining what was going on and I told them I believe it was all due to his breathing.  At the time, I didn’t know how it was all connected but as his mom that saw him everyday, I knew his breathing was somehow directly related to his vomiting.  The pedi did not agree and thought we were dealing with a pulmonary (lung) and gastrointestinal (tummy) issue.  He ended up getting yet another ear infection so our pedi sent us to the ENT and on November 16th he had tubes placed. After the tubes surgery, Jude was having a hard time getting his oxygen saturations up.  The surgery center staff took a chest x Ray and concluded that he had broncholitis….fancy word or inflammation of the bronchiole tubes in the lungs.  This is usually caused by a respiratory infection.  So they assumed that Jude was sick and we didn’t know he was before the surgery.  After 6 hours in recovery from tubes, we were sent home to follow up with our pedi.  I called the pedi and pretty much demanded a consult appointment with a pulmomologist.  The pedi thought we should also get a GI consult.  Well as many of you know, specialty appointments never happen quickly.

Thirteen days after the ear tubes surgery was the beginning of the end. November 29, 2012…. The morning of Jude’s 11 month birthday, I was putting him in his high chair for breakfast and I accidentally pinched his finger on the tray of the high chair.  He took a deep breathe in to cry, got stiff, turned blue and quit breathing!  I of course called 911, and by the time they got there, he had come to and vomited.  When they took him, he was not himself….he was very lethargic and zoned out.  Once we finally got him to the right hospital…Cook Children’s Hospital…we got the diagnosis that explained all his symptoms over the last several months…….Pulmonary Hypertension. PH is high blood pressure in the lungs, that can lead to heart failure. It has many causes, and no one, at the time, was sure why Jude had PH.

He was diagnosed by doing an echo on his heart and it showed that the right side of his heart was failing….it was severely enlarged. (Side note: vomiting is a symptom of right heart failure).  The pressures in all his veins and lungs were more than double what they should have been.  He was admitted to the ICU that night and put on nitric oxide. The doctors and nurses were perplexed as to how this was missed for so long.  PH is most commonly misdiagnosed for asthma.  Our pedi did say that Jude was prob going to be an asthma kiddo.  The nitric oxide was not working.  The episode Jude had at home kept happening at the hospital and we still did not have any answers as to why he had PH.  When I say episode, it was technically a PH crisis. One night he had a pretty bad episode and the docs had to bag him and intubate.  We made the decision to put him on ECMO (Extracorporeal Membrane Oxygenation), which is a machine that takes over the work of the lungs and heart, so they have time to rest.  In Jude’s case we were buying him time to figure out why he had PH and hoping that by resting the lungs and heart they could recooperate a little. While he was on ECMO, Jude underwent a heart catherization to figure out what was going on in his heart and lungs and causing his pulmonary hypertension.  The heart cath told us that his pulmonary veins were small, narrowed and underdeveloped.  This is when we found out he had PVS (Pulmonary Vein Stenosis).  This was causing his PH.  The cardiac surgeon told us that Jude was not a canidate for surgery on his veins because they were too small, underdeveloped and the disease went deep into the lungs.

Our next step was to see if Jude was a canadite for lung transplant.  He had to come off ECMO to even be considered for lung transplant.  While on ECMO Jude started to have right side body twitching.  He was hooked up to EEG and had a brain ultrasound.  The neurologist did not like what he saw on the left side of Judes brain and wanted to do an MRI for a more definative picture. We decided to take him off ECMO, and go ahead with planning to donate his organs when the time came.  He came off ECMO and I held him, because we were not sure how he would do or how long he would last off of it.  Jude suprised everyone and did pretty well. The next day we had the MRI because if he did have brain damage then he would NOT be a canidate for lung transplant. During the MRI, he crashed and they brought him back.  The MRI did show significant brain damage on the left side of his brain.  So this brings us to a crossroads with Jude’s life.  We had to come to terms with the fact that we are going to lose our baby boy. We had Life Gift contacted again for organ donation.  While we waited for them to arrive, we had all the family come through and say their goodbyes.  Daniel and I laid with Jude and cried.  I wrestled with God because I was so angry that He was taking him from me.  I know that Jude was God’s first and He graciously trusted me to be Jude’s mommy, but I wanted a miracle!!

Once Life Gift was in the OR and ready to take Jude once he passed, we went down to a room outside the OR and unhooked Jude from everything.  We were told he would probably pass within minutes.  God and Jude had other plans……he hung on for 100 minutes. This was the most heart wrenching, emotional 100 minutes of my life.  No one anticipated this, not even the doctors.  After 90 minutes he was no longer able to donate organs.  We put him back in the bed and I laid beside him as they rolled us back to an ICU room to say our final goodbyes.  Walking away from his hospital room and leaving him just laying there, haunts me. I know it was only his body and his soul was already in the arms of Jesus but my heart was so broken, it could not comprehend all that was happening.  Jude went to Heaven Dec. 6th, 2012 at 6:00pm.

I share all this because my hope is that someone may resonate with our story.  Stories are meant to be shared, and our story may help another family. I thank you for taking the time to read about our little mans life.  He will forever be remembered and his life has directly effected his little sisters life.  I will share about Jaylie in an upcoming post.  The loss of a child is a pain like no other.  I know God can understand because he gave his only son up to save me.  He knew the ultimate plan and that good would come out of His sacrifice but He still wept.  God understands my pain but unlike Him, I can not see the big picture but I trust in Him and believe good has and will continue to come from Jude’s death.

 

What is in a name?

Choosing a name for my blog was a long process!!!  I wanted it to be relevant to my life and have meaning for me but not be so long that people could not remember it.  I had so many ideas but once I started typing them in, many of them were already taken.  The blog name I chose is a little longer than I would have liked but is encompasses all that I wanted in my blog name.  So why “Anchor of Hope and Joy”?  On a personal level the anchor symbol relates to my son Jude Daniel Sawyer, who was called to Heaven in December of 2012.  It represents Christ being my anchor of hope that I will see Jude again soon. I have a tattoo on my wrist for my baby boy, as a constant reminder that I do have Hope in the Lord!!  The tattoo was designed by a close friend who is very talented.

Anchor of Hope tattoo
Anchor of Hope tattoo

This hope I am referring to is biblical hope, which means to have a sure anchor to the soul. (Romans 15:13) God is my anchor and my hope lies in the Lord. This hope is a confident expectation and desire for something good in the future.  It is not a “cross your fingers”, it is a “EXPECT great things from God”.  I expect to see Jude again and never be threatened with loss again because our new life in Heaven will last forever.

Now for the second half of my blog name “JOY”, this is a result of our Hope in Christ.  Joy is a fruit of hope. Joy is not the same as happiness because happiness is superficial, flimsy, and circumstanial.  Joy is deep and firm, not natural but spiritual.  Joy is the assurance that God is in control of all the details of my life, the confidence that ultimately everything is going to work out, and the concious choice to praise God in every situation.  This does not come natural to me at all, but as life has thrown some curve balls my way, I have learned that this is the way I want to live my life.  Another meaning behind the word “joy” in my blog name, is my baby girl Jaylie Joy.  She is our rainbow baby and she has brought so much JOY to our lives. She has the same condition her brother did (Pulmonary Vein Stenosis). We are not sure how long the Lord will allow us to keep her here with us but we HOPE it is for a full lifetime. Her smile draws you in and she truly has a joy about her that is contagious.

So this is how I finally decided on “Anchor of Hope and Joy” for my blog name.  I hope that as my blog grows I can bring hope and joy into the lives of others through sharing our life journey.

Jude Daniel Sawyer
Jude Daniel Sawyer
Jaylie Joy Sawyer
Jaylie Joy Sawyer

About Me

My name is Jessica Sawyer. I have been married to my loving husband for 11 years.  We have 4 beautiful children. Jaxon, Joshua, Jude and Jaylie.  Our life has been far from fairy tale, but it is our life journey and we embrace it as gracefully as we can.  We both love the Lord with all of our hearts and honestly could not have made through some of our sharp turns and detours in our journey without Him!! We have experienced loss at the deepest level.  Our third born, Jude, passed away just before his first birthday from Pulmonary Hypertension, which was caused by Pulmonary Vein Stenosis.  This was devestating to our family and our marriage.  We know we will see him again, but until then we continue our Hope in the Lord.  His baby sister was born 2 years later (2015).  Jaylie Joy is our youngest and also has Pulmonary Vein Stenosis (PVS).  I will write more about this diagnosis and the impact it has had on our family in later posts.  I am excited about learning to blog and share our story with all of you.  I hope that our story can encourage, help and direct those that come across it.

Meet our Family
Meet our Family