We Got a Room!

Just wanted to write a quick post, and PRAISE, that we got a room at the Ronald McDonald House!

As many of you know we were worried last time about not getting in...as they were really full!  Well, we did end up getting one the day of Stephen's pre-op...and then had to cancel because the surgery was delayed.  We were pretty certain we would get one this time (they said they had a bunch of stars by our name!) but just got the official call yesterday!!!!  Praise God!  This is a HUGE financial and emotional relief!  It only costs $20/night and is located on the top of the hospital parking lot so the parent not staying with Stephen is walking distance away.

My heart breaks a little at having to be a resident there again.  Those who are close to me know how dear this place is to my heart and know how much I would prefer to be there to support other families...not be the one in need of the support.  Nevertheless, I am SO grateful that it is always there when you need it.  It will be hard to be in the line for food, and not serving.  To look out at the playground and not be setting up a fun carnival for the kids.  But this time we spend there will make our next event we plan just that more special!

Pre-op is tomorrow morning at 9:30...so far he is still healthy...let's pray it stays that way!

Other prayer requests (on top of the ones from the last post)

I have a bit of a dry throat that is causing me to cough.  Pray that it is nothing major and goes away.  A cold would keep me away from Stephen...and I don't want that!
Pray for Lizzie & Audrey...they are struggling with having to leave tomorrow.  They will be so loved by my family, but they don't want to be away from us.  Pray that they would have extra peace...an lot's of fun!

And thank you all!  It is so VERY comforting knowing we have an army of people praying for our family!

4 Days and Counting...

I am often asked (by those who can get a hold of me) how I am doing.  You see, some may be surprised to find out, I am actually an introvert... an extroverted introvert that is.  I am not shy or quite (duh) but I am also not recharged by people.  I need my quiet, I need my away, and at times like these, I become somewhat of a hermit.

It doesn't mean I don't need people...I do!  It just means I probably can't talk.  It takes too much of me emotionally (at times) to have a conversation.  Please don't feel bad if you have talked to me lately, and please don't stop trying to call.  Just know, if I pick up I am good to talk, if I don't, I either can't find my phone, or just can't talk right now (or both!).  And your text messages, I may not be able to emotionally type a response back, but I covet the encouragement.  I know this could feel like a one way relationship, but right now, that may be all I am good for.  And I appreciate those willing to engage in it.  Thank you!

I have spent the majority of the past 2 weeks in isolation (lockdown) worried that Stephen will get sick and his surgery will once again be postponed.  Now, I found myself slightly terrified that he is not going to get sick, and in 4 days, this will all become a reality.  So, this week I have been trying to keep busy (all while being in a rather hot home) by organizing my garage.

You would think I should be cleaning my house, but no...garage it was!  It's kind of like the whole "If You Give a Mouse a Cookie" book. You see, I wanted to repaint the inside of my house (yes I am crazy...and no I probably won't have time to do it now) so I started packing up some things in my room to make that possible.  I had to put these things into the garage to make space.  The garage was a wreck which stressed me out.  I didn't need more stress, so I decided to clean the garage...so I can put more stuff in it!  Makes sense right?!  But in cleaning it I needed to go through e.v.e.r.y.t.h.i.n.g because why keep what I don't use?!  So, yesterday I finally made the trip to the thrift shop with a van full of unneeded items...and it felt SO good!

Really, all of this is a coping mechanism to keep busy and keep my mind off of 4 days from now.  As soon as I stop, I think, and then I cry, and then I worry...and who needs to go through that e.v.e.r.y day...not me.  I am going to be a sobbing mess on Tuesday anyway, so why not just wait to until then to open the floodgates?!

However, now it is getting serious.  Again, I half expected it to just get cancelled again, and now (with a perfectly healthy child) it may not!  That means I need to stop it with the garage, put my painting dreams on hold (Agreeable Gray will just have to wait), and get this house cleaned up!  I mean...it's been 2 weeks of 4 kids in it ALL the time.  Yikes!  I need to actually start thinking of packing again and make some lists of what needs to be going where.  I have to pack for 3 kids going up to my mom's for an undetermined amount of days.  I need to pack for Joe, myself and Stephen for the hospital for again...an undetermined amount of days.  I need to buy snacks, stock up on pet food...and I don't know what else yet...hence I need to make a list!

So, how can you be praying for us?  Please continue to pray for the health of our entire family, especially Stephen.  Pray for peace so I won't be a complete stress case.  I am already having difficulty sleeping at night.  Pray that I can shut off my mind and get some rest.  Pray of Michael, Lizzie & Audrey as they will be away from home and their parents.  They truly are INCREDIBLE kiddos and have handled this life so well.  Pray for Joe.  I know he hurts too and deals with the stress so differently than I do.  Pray that he too has great peace and strength as he holds our family up.  Pray for Stephen, that as the surgery draws near, his nerves would not.  Pray that the surgery would go smoothly and that he would have a speedy and uneventful recovery.  Pray for his spirit, that he would come out of it all the smiley, joyful kiddo we all know and love so much.   And for a room at the RMH to open up...I think it looks good...but prayers are appreciated!

Pre-op is set for Monday friends...and surgery Tuesday if all stays well.

Oh Lord, this is happening isn't it?  Be with us.   Use this.  Use us.  Jesus, we trust in you.

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.