New Date on the Calendar

A friend gave this to me the night before we
got the new date...how perfect, and beautiful, is this!!!
And she MADE it...SO talented!  

Man, I didn't realize how odd it would be to have a surgery postponed.  It's strange really.  For so long I feel like "normal" life has been 1/2 put on hold and 1/2 still here.  We can't do the normal social things, but we still have to shop and eat etc.  It's been interesting.  A friend put it best when asking me how it feels...it's like we are just floating.  We are here (sort of) but not here too.  Life is moving, but not much is happening.  I don't know.  But the wait for a date is over.  July 31st it is.

The date didn't come easy.  As expected, I didn't receive a call last week, and I was trying to be patient, but caved and called on Tuesday.  She said she saw she needed to reschedule Stephen and would give me a call tomorrow (which was yesterday).  I honestly didn't even expect a call that day, but at 4:30 she called and threw me way off.  The date they were going to give us was August 20th.  Seriously, I was shocked.  I mean waiting has already not been ideal, but then postponing for 8 weeks seemed exceptionally long...especially when he is perfectly HEALTHY right now.  I mean August 20th...that gives him SO much time to get "sick" again!

I expressed my concerns, which were mainly even if he were to get sick again what is next...another 8 weeks?!  That would put us into cold/flu season and NOPE not doing that unless it is deemed medically necessary.  SO, she offered me a sooner date, July 31st with the catch that he has to be the 2nd surgical case of the day...not ideal.  UGH...my heart broke.  Last night I just felt like crying.  Look, it may not seem like much, but life has been off lately.  A lot of crazy anticipation and waiting, and well, floating.  So hearing that he would be second case just deflated me.

Why you may ask?  First case is always ideal.  Sure you have to check into the hospital at 5:30 am, but you do so with a drowsy kid who isn't even hungry yet.  And you generally start on time.  Which means he only has to make it to 7:30 without eating...not hard at all.  2nd case...that's a different story.  2nd case means he can't eat solids after 6am.  So we still need to wake him up at 5 so he can eat, but then he gets no more food.  He also has to stop all liquids at 10:30 am for a (hopefully) 12:30 start time.  And that's the other thing...the start time can easily vary based on the first case.

For example, Stephen's cath lab in May went longer than planned for with the extra work they found. That meant the next case was pushed back.  The longer it is pushed back the longer he goes without being able to eat or drink.  He will also be VERY aware of what is about to happen.  And this time we can't even go into the operating room with him (it is an even more sterile environment than the cath lab....and rightfully so!)  =(  That means my hungry, thirsty 6 year old will have to be wheeled back into the OR alone...cue tears.

Look, I know I am being dramatic.  I know many kids have done this, and they survived.  I know he will even do better than I expect.  But that doesn't mean my mama's heart doesn't break a little more knowing that he has to go through a little more.  I would take this entire operation off his plate if I could, but I can't.  And I know how truly small this problem is compared to some BIG problems other kiddos are facing.  SO, I am going to keep counting my blessings and try to make it through the hard days ahead.

That being said, we took the night to process it, and I called back this morning and asked for the July 31st date.  As much as a first case surgery would be ideal, the July date works SO much better for us, and potentially offers a little more wiggle room is anything shall come up to postpone it again.

Commence Lock Down.  We are going to try to spend the majority of the next 2 1/2 weeks at home.  That means more missed birthday parties, soccer practices, friends houses, cousins etc.  But, on the bright side, it will hopefully mean some sweet sibling time.  I am going to try to make the most of it for the kiddos, while also trying to clean/organize bit!  So hopefully we will be sleeping in a tent in the backyard, enjoying a couple more World Cup matches, playing new board games, watching new movies, crafting it up and hopefully make some fun memories in the process.

And luckily, before lock down began, we got to enjoy a night at church where Stephen got to see some pretty awesome animals, hold a snake, and take a picture with Paco the Sloth! And sport his awesome new Vogmask...bc there was like 70 kids in there and I wasn't going to chance anything!

Prayers for our health, our hearts and our precious Stephen are greatly appreciated.  We know God's hand is in all of this.  We know He will continue to use Stephen's special heart for His Glory, and we are grateful for that!

Jesus, we trust in you!

Remaining Hopeful in the Waiting

Well, this last week has been roller coaster of emotions.  Last Saturday, Stephen began having a clear runny nose.  My stomach sank the first time he coughed and continued to do so each time after.  The whole week was spent wondering if the surgery was even going to happen rather than preparing for it.  And, to an extent, I wasn't even sure what outcome I wanted!

Super tough kiddo after his labs were drawn!

And though his nose has remained clear, his cough is all but gone, his CBC and CRP levels were perfect, and chest X-Ray and lungs were clear...his nasal swab came back positive for the rhinovirus and after a four hour pre-op appointment yesterday, we are now back to square one.

Crazy.  I have so many thoughts and yet still don't know what to think....is that even possible?  On one hand I should probably feel disappointed.  Having it put off isn't exactly convenient.  We have been mentally and physically preparing for July 2nd.  I have organized the plan with family for the older 3, purchased hospital snacks, lined up house/pet sitters, let my food run low at home since I was planing on today being the last day here and so on.

Yet, I have peace over it.  I don't feel disappointment, I don't feel relief...honestly, I am not really sure what I feel.  I feel sort or blank, whatever that means.  If nothing more, this postponement has once again proved I am not in control.  Of course I need to plan.  I will need to once again (when we get a date) figure out when/where the kiddos will go.  I will need to pack/prepare and be somewhat organized.  But still, I will have a better perspective of my place in it all.  I am blessed to be a wife and a mom and I LOVE taking care of my family, but I often grasp at control through it.  I somehow always go back to thinking I can plan/organize my way into control...but I can't.  I can honestly say I think this next time around I will have more peace.  I may still have anxiety & fear (and I am OK with that) but I hope to enter it fully knowing God, and God alone, is in control.

I mean shoot...there is NOTHING I could have done differently to have prevented this.  NOTHING.  And so, again I loosen my grasp a little more.

So for now we exhale.  We are back to square one and will be awaiting a call on an unknown day about an unknown surgery date.  I don't know if we will hear this week, or next.  I don't know if it will now be at the end of July or in August.  I don't know if I will get weeks notice or less.  I am right back to "I don't know"...but praise God, HE does.  And that is where my peace comes from.  I fully believe His hand is in this.  I know He is right here with us, and so I take comfort in knowing that I don't need to know it all.  I will choose to remain hopeful in the waiting.

For those looking for specific way to pray, please continue to pray for the health of our entire family.  It is now clear that one minor bug is all it will take to delay, so pray we can all be symptom free!  Pray for the hearts of each of our kids.  It affects each of them so differently, but they feel the affect of all of this too.  They are missing out on so much right now.  And pray for God's peace to continue to rest on Stephen.  He has been handling all of the tests/swabs/pokes and appointments SO well.  Pray that he would be in perfect health for the surgery (whenever it may be) and that he would have a speedy and uneventful recovery!

And thank you for ALL of the support you have been showing our family.  It is truly touching.  This has been a rough week, but I have felt so cared for...thank you!

What is the Fontan?

I already wrote this once...and some how it vanished...so sad!  So this is a quick attempt to try once more!

Before Stephen was born we were told he would require a series of three (palliative) open heart surgeries.  The first (the Norwood BT Shunt) was performed at 10 days old, the second (Glenn Shunt) was performed at 4 months old and the final part of the three staged repair is the Fontan, which he will take place July 2nd at 6 years old.

Before I start, if you have not read about his diagnosis, you can find that here...

Stephen's Diagnosis

Along with the first surgery here...

Norwood BT Shunt

And the second surgery (how he is currently "plumbed" inside) here

The Glenn Shunt

The Fontan... (info taken from Cincinnati Children's Hospital)

During the Fontan operation, the blood vessels returning blood to the heart from the lower half of the body (inferior vena cava) is connected directly to the pulmonary arteries. Until now this blood has bypassed the lungs and has been pumped directly to the body resulting in oxygen levels lower than normal (hence why Stephen has his precious blue/purple lips) 

After a Fontan operation, oxygen levels will be nearly normal (90s). The two most common methods of performing the Fontan completion today are the "lateral tunnel" and the "extra-cardiac" techniques. 

In the extra-cardiac method, which Stephen will have, the inferior vena cava is connected to a synthetic tube, and is sewn to the underside of the pulmonary artery, routing this blue blood flow outside of the heart. 

The surgeon will make a "fenestration" between the Fontan circuit and his atrium so that if pressures become very high in the Fontan circuit, there is a "pop-off" into the heart. 

This photo shows the extra-cardiac fenestrated method of the Fontan which he will have.  

The surgery itself will last around 5 hours, and he will be on the bypass machine for a portion of it.  The length of the stay is unknown.  At best he is there 7-10 days, though I believe 2-3 weeks is more realistic.  The doctors did warn us it could take a month, and for some kids, months.  The longer stays, if all goes well, are usually due to drainage issues called pleural effusions (excess fluid build up around the lungs).  Due to some of the findings during his cath lab procedure, drainage could be an issue for Stephen, but really they can't say anything for certain.

10 days.  We have 10 days left before this surgery.  3 weeks out when we got the date I just put it out of my mind...it was far enough away.  Now the reality is starting to hit me like a ton of bricks and it hurts.  I hate knowing that in 10 days my precious son will be lying on an operating table.  I hate knowing that he has to be broken again to be "fixed".  But more so, I hate that I can't take this away from him...that I can't take his place.

Praise God I know He loves Stephen more than I can ever love Him.  That when it really matters, He did take Stephen's place.  Because it is that hope that gets me through.  It is that hope that brings context to our suffering and that hope that makes no suffering ultimately hopeless.  It doesn't mean our suffering is not full of pain, grief, fear, or frustration, but that these negative states are only temporary if we believe in the resurrection and put the redemption of our suffering into the hands of a loving God.  For one day, ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  I EAGERLY look forward to this day!

PS, I will be updating the Blog through out his hospital stay.  If you would like to stay connected, but don't want to have to check back to see if a new post has been written, you can enter you email into the "Follow by email" box to the right on this blog page and be sent all the updates =)

Fotan Surgery Date

I guess I will start by saying our consult with the surgeon on Friday went REALLY well.  Overall, I am truly impressed by him and know he will take the BEST care of our sweet Stephen.  We had a nice conversation, got all of our questions answered, and left with peace that he is the right surgeon for our son.

That being said, we have been given a date, July 2nd...3 weeks from today.

3 weeks.  I have 3 weeks to get everything "together."  I will be spending much of this coming week getting things settled at church, next week working on my house and the final week just soaking up family time.

I knew it would be "soon", and prayed for God's perfect timing, but it still felt far away before we had an actual date.  Now July 2nd is on the calendar and in 3 weeks my sweet 6 year old boy will undergo his 3rd open heart surgery.

I am often asked how I am doing.  The answer: As good as anyone would be doing 3 weeks before their child's major surgery.  And honestly,  I'm just not thinking about it.  I can't.  Thinking about the reality of what he will undergo is just too much.  It hurts.  So I am just focussing on God, His promises, and what I need to get done.

Most people are gearing up for a summer of sun, beaches, pools and vacations while an open heart surgery and a hospital stay are our big plans.  Yuck.  Matter of fact the surgeon said it will take a month to heal mostly, and then will be another 3 months or so before he could play soccer or baseball.  So I am sure this summer will be pretty disappointing for our sport loving little man.

Therefore, we are trying to look at the positives.

1.  He needs this surgery.  The prayer is his oxygen saturations will go up to the 90's and he will have more energy and stamina to keep up with the other kiddos his age...and make it to 2nd base without being too winded...huge win!  And while I wish he didn't have to go through it, I am grateful that it exists (but still praying for a better future solution!)

2.  He gets to Make a Wish!  Stephen's official Make a Wish packet came and our little buddy will get to Wish his hearts desire...and that is something fun and exciting to look forward to!!!

How cute is he is his Angels hospital gown?!

3.  It may not be a fun summer vacation, BUT he gets to go to one more Angel game on June 24th...and gets to sit in a suite!!!!  Joe's work rented a suite for the employees and their families, and though we should be staying home away from germs a week before surgery, we just can't pass this up!  Stephen LOVES the Angels.  He would watch and/or go to EVERY game if he could.  We have already talked about how he can watch all the games from his hospital bed, had a special Angels baseball hospital gown made (and a matching one for his custom Mike Trout doll) and were gifted a special Angels blanket to take to the hospital.  So having one fun family night before this all begins is pretty GREAT!!!

Stephen's special Mike Trout doll made by a fellow heart mom
and his own little hospital gown made by Wishers & Dreamers!

Prayers for our little heart hero and our family are greatly appreciated.  Please pray that we ALL can remain healthy over the next 3 weeks.  As hard as it will be for July 2nd to come, I really do not want it to be delayed due to sickness.  He will go in on June 29th for his pre-op apt and I pray that he is in perfect health and can move forward.  So, if you are sick (or have just been sick) or your kids are sick (or have just been sick) the BEST thing you can do to help (other than prayer) is stay away.  Well wishes from afar will mean MUCH more!  I cannot emphasize this enough.  We are basically going on lock down (minus the Angel game...yay!)  And then needs to remain healthy so we can be with I'm in the hospital, so his siblings can visit, and so he can have a safe environment to come home to.   Getting sick right after open heart surgery is NOT ideal.

I will try to write a little more on the actual surgery soon, but for now please be praying for health and peace for our household =)

Thanks Friends!

Small Update

First, Stephen is doing VERY well.  Other than a nasty rash that covered his ENTIRE body, recovering from the cath lab wasn't too bad.  He made it to day 3 before crying over the fact that he couldn't play baseball (literal tears fell) and by day 5 I caved and let him throw a ball.  Now he is back to normal and just awaiting a date!

Waiting has been so hard!  We will have a consultation with his surgeon this Friday and will FINALLY get the date for his open heart surgery.  Patience.  I have never been great at it, and along time ago I stopped praying for it.  I say that with a smile because I learned the hard way that when you pray for patience God doesn't just go "poof" and magically bestow it upon you (wouldn't that be SO nice though?!)  

So, I am done worrying about when it will be and I am done trying to plan every scenario (because yes, I am that crazy).  My hands are open to you again Lord.  Take it.  Take it all.  The worry I hold, the stress, the anxiety, the fear.  I give it up to you again.  I should never have grabbed it back in the first place, though if worrying were a virtue, I would be quite virtuous.  I am done, Lord.  You know when, and I am content with that.  The details, the care of the other 3 kiddos, the finances, the many "to dos" will work themselves out whether I worry or not, so I'm just going to (try) to stop.  I want to walk into this with open hands, Lord.  It is Yours, I am Yours, Stephen is Yours, and that is MORE than enough.  

Jesus, I trust in You.

The Cath Lab is OVER... Hallelujah!!!

This is the first major step before his open heart surgery and it feels GREAT to have it behind us!  Here is a little bit about our day yesterday...

We woke Stephen up around 5:45 to walk over to the hospital.  He was clinging to his Mike Trout doll and cuddled up with his new star wars blanket.  On the way over he cracked a smile as he woke up and he remained joyful the ENTIRE day.  Honestly, his emotional response to all of this was WAY better than I had anticipated.  Sure, we talked things through, but I did not expect him to be giggling as we laid him on the procedure table.  I fully excepted him to show some signs of nerves, etc.  But he was SO peaceful...and let's be real...that's ALL God!  He was incredible!  So smiley, so brave and so strong!

As we checked in the nurse noticed his doll and gave him his own special wrist band (that only fit around his neck)
and Stephen thought that was pretty cool!

He was all smiles getting his vitals taken, and even when they were ready for us to walk to the cath lab, he preferred to be wheeled in the bed rather than walk in Joe's arms...again...so surprising!  But so BRAVE!

Both Joe and I were able to be there as they put him to sleep with gas.  He held my hand and we talked about his pets, Angels baseball and his favorite players.  He went down easy, and they let me kiss him goodbye.  Walking out of the room is SO hard...but so is seeing him lying on that table.

The cath labs goal was make sure he can tolerate the Fontan surgery.  They had to go in through an artery and vein in his groin as well as a vein in his neck.  During the procedure they thread a catheter into various parts including his pulmonary artery, atrium and ventricle to collect data on pressures etc.    If there is no work to be done, they get all of the readings they need and it is over.  As it turned out, Stephen had quite a bit of work to be done.

This was a toughie for me.  After the entire procedure was over, and we met with the doctor, I was thrilled that he did not go into heart bock...but felt so deflated on the news she gave.  So, here is my attempt to sum in up...

First, his glenn shunt had narrowed and needed to be ballooned.  This may explain some of the pain he has lately felt in that area.  Next, they found quite a bit of collaterals (extra blood vessels) that needed to be coiled (plugged up).  While this is VERY common in single ventricle patients, they pose a problem for his upcoming surgery...the part I really didn't want to hear!  It turns out he also developed Pulmonary AVMs.  The good news is that they should reverse themselves after the next surgery.  The bad news, they cause lower saturations already, so they could not coil all of his collaterals now or else he could potentially be too blue.

What does this mean for the next surgery?  While they don't know for sure, uncoiled collaterals often cause excess drainage which means he will mostly likely have a longer hospital stay.  He also may need to go back into the cath lab during his recovery to have them coiled (and maybe even right before the surgery).  This will all be discussed with the surgeon before hand to see what he thinks needs to be done.  The AVMs may also cause his oxygen to be lowered, so rather than coming out of the next surgery in the 90s...she prepared us that he may come out much lower, maybe even in the  in the 70s, and could potetnially need to be on oxygen for awhile (even after we return home).  I realize that these are all just "possibilities" and "maybes" but they are new "possibilities" and "maybes" that we had not heard before.

So again, while I was rejoicing in the fact that Stephen tolerated the cath SO well, I was having to process a LOT of new information and it left me feeling a bit dejected.

The good news, it won't kill him.  One of the fellows could tell I was concerned with long term side effects and made this VERY clear to me.  It will make things uncomfortable and hard on him after the surgery, but they are not life threatening...so I am just going to focus on that.  And while I don't love the news, I am grateful to already know it is nothing to be overly concerned about.

SO, today I am going to focus on being grateful to have my boy home and Praise God for His protection and peace over Stephen!

As far as recovery goes, he needs to take it easy for a week.  No running, no baseball, no bikes, scooters...really just little movement period!  Also, no swimming or water emersion and daily dressing changes on the 2 areas.  We will head back to the hospital on Thursday to follow up with cardiology and await the date for surgery.   So, we will be doing a lot of LEGO building, movie watching and hopefully couch cuddling (sounds good to me!!)

And thank you all for your prayers...they truly mean the WORLD to us.  I am still a bit too emotionally drained to get too sappy on you, but know that they carried us through and we are so very grateful.  May God give the doctors and surgeon wisdom is deciding how and when to move forward, and may he continue to give our precious Stephen His peace that TRULY surpasses all understanding!

Jesus, we trust in you!

Here are a few more pictures of our smiley boy =) And PS...I have a new phone!!!  Joe ran to the Apple store in Temecula last night...love that man!

Stephen waiting to be called back to the cath lab

Being wheeled in!

Just after we were allowed to go back into the recovery area and be with him.

Back to his self once the medicine began to wear off and he could talk again!

All dressed and ready to GO HOME!!!!

Last Minute Thoughts

This is it.  Tomorrow when I wake up (if I sleep) we will walk right over to the hospital to check our little guy in.  I keep trying to tell myself "It's only the cath lab!"  because Lord knows the open heart surgery will be SO much harder on him recovery wise.  However, with his past complications this doesn't feel like a walk in the park.  So tonight as I cuddled him to sleep, I kissed him extra and prayed over him, because really...that's all I can do now.  It's out of my hands.  Shoot...it was never in my hands!

At times like these I am constantly reminded of Abraham and his unwavering faith and trust in the  Lord as He asked him to sacrifice his only son Isaac.  I know in my heart I need to hold Stephen up to God with my outstretched arms...but I want so badly to just wrap my arms around him and NEVER let go.

So tonight, as I sit here with the thoughts of tomorrow in my head, I am trying to remind myself of the truths I know (and have been reading in a great book on suffering).  That God loves Stephen deeper than Joe and I ever could.  That He has promised to work ALL things out for the good of those who love Him.  That He can take our suffering and transform it into something beautiful.  That He has never left us and will NEVER leave us.  That God loved each of us SO much that He sacrificed His one and only son that whoever believes in Him shall not parish but have eternal life.  That when seen in the light of the risen life no cross, no suffering of any kind, can be ultimately tragic because God WILL bring perfect, absolute and eternal consolation out of every desolation...especially death.    That God WILL one day wipe away our pain and replace it with warmth, love, peace and joy.  That Jesus does't leave us by ourselves to just "figure it out" but that He is ALWAYS present with us.  And PRAISE God for that!

Which means tomorrow Stephen will not be alone in the operating room with the doctors and nurses, but that the God of this universe will be present with him.  And my prayer is that the Holy Spirit would fill that room with His presence.  That a multitude of angels would watch over and protect our precious son.  And that God would use ALL of this for some greater purpose.

I am truly honored to be Stephen's mommy.  My love for this little guy runs deep.  And tonight, as I want to cling to him and hold him tight, I am trying to remember to look to Jesus...because He is my rock and my refuge, an ever-present help in trouble.

Jesus, I trust in you.