Day 2 and 3

I wish I had the time (or energy) to put my thoughts and emotions in written word right now.  I have seen and felt so much.  But honestly, the days are long and given fully to my sweet boy, and the nights...well my brain just doesn't work!   I thing I have got around 8 hours of sleep the last 3 nights combined!  It is amazing how God gives you the strength (and energy) to get through the valleys.

A lot has happened since Day 1 and it is best shown in pictures =)  I need to figure out how to get the videos up...but until then, here is Day 2 & 3!

DAY 2 (Wednesday August 1st)

At 6:30 am Wednesday they got him into the chair to sit.
This really helps drain the excess fluids in his body after the surgery.  You can see how tired he was from that move!

He really couldn't talk much (still doesn't but it is getting better) so he said
"when I open my mouth that means put ice in it".  And for much of the morning
 (before he was allowed to drink) he would just open his mouth...it was pretty sure!
Once I missed the signal and got a "mom!" it a quite, but quite serious, tone =)

A sweet, unsolicited, smile!!!

HIs first popsicle...EVER!!!  He is a funny kid and has NEVER liked popsicles.
BUT, he wasn't allowed to eat or drink...so he gladly ate this!

Just before a little sponge bath!  To explain the wire/tubes.
The top right circle (you can see well in the picture above this one) is a TT line (trans thorasic) that goes right to the heart.  It will stay in until we are ready to go home so they can pull blood work from it instead of poking him AMAZING!  He also had a central line in the left side of his neck which was removed in the afternoon on day 2 (Wednesday) but can be seen in the other picture as well.  Nasal cannula to supply oxygen ( I think as of today it was down to 1 liter).  Little white circles connected to wires are leads that show heart rhythm etc.  The white boxy thing to the right of his belly button is the temporary pace maker wires which are currently hooked up to an external pace maker that sits on his bed and is fully pacing his heart (he has a junctional rhythm if not).  You can follow the wires form the white part to where they entire his skin to his heart.  Directly under his chest bandage and to the right of the pace maker wires are 2 chest tubes to drain all of the excess fluid in his system.  On his left hand (but right side in picture) he has a peripheral IV in top and an arterial line (which was pulled out today!!!) to the side.  And on his right hand he currently has another peripheral IV which they tend to use to administer some of his pain meds.  It is quite a bit of stuff!  But it is amazing watching each one come off!!!

This is one of my favorites!  His smiles are still few and far between, but this one was the best!
We had just set up his bed and told him the Angel game would be on soon!!!  This was his reaction!!!

And then this was how he looked during the entire game!  Poor guy was EXHAUSTED to say the least!!!

His wonderful cardiologist form Rady's (Dr. Davis) stopped by for a short visit to check up on him.
We truly were blessed to have him on our team these past 6 years!

And then he went back to snuggling his Mike Trout doll and sleeping!

Not much happened Day 2...mainly a LOT of sleeping!  He did get up twice and sit in a chair for a few hours...but that was the extent of it.  

DAY 3 (Thursday August 2nd)

Today was moved from the CVICU (Cardiovascular Intensive Care Unit) the cardiac step down unit...a VERY good sign!  One of the Pas said he was hands down the BEST patient she has ever seen 2 days after the Fontan...PRAISE JESUS!!!  It is hard to believe its only been a little over 48 hours at this point since he came out of surgery!

He has defiantly won the heart of his nurses.  His nurse in the CVICU was sad to see him go (and wanted to go with him) so she came by and visited through the day =)  

The other big accomplishment today was walking!  The first time was hard to watch...he was in so much pain.  But he did it!  They actually has to slow him down.  He knew he had to make it once around the pod and he just wanted to get it over with!  I did a mini figure hunt to try to make it less painful..didn't work so much the first time around...but the pictures can show you that...

Working through the pain.  Such courage and such strength and such a young age.
Open heart surgery hurts.  It just does.   And the most painful part is the 2 large chest tubes (they get smaller then the part you see in the picture) that enter in above his belly and basically sit on a sensitive lining of his lungs (pleural space).  I can't even imagine.  I am not sure I would tolerate the pain as well as he is.  But grateful for God's provision through it all!

And then when he returned for that walk he was OUT!  

And I still can't get over those sweet PINK lips!!!

The 2nd walk went SO much BETTER!!!  I have a better video to show it (but don't know how to get it on here).  He actually smiled and giggled a small but as he spotted the mini figures.  The first round had Star Wars figures and this one had some Ninjago...he gave a little laugh when he found Lord Garmadon!  He even walked through all 3 cardiac pods this time...so a much larger loop.  He stopped once for a little pain, but overall tolerated it SO WELL!!!  He is still a bit too exhausted to do much of anything.  He couldn't even put his figures together yet, but that will come with time!  And he does have quite the entourage for these talks!  One nurse has to be in charge of his oxygen tank, 1 has to hold his chest tubes drainage tanks, and the other has to maneuver his IV pole...and then Daddy of course holding his hand =)

Side note...the male nurse on the left is a Boston Red Sox fan...we still liked him though =)

Overall day 3 was a big day.  He made it out of the ICU and went on 2 walks (HUGE) and even ate a little chicken and about 12 pretzels (compared to the 6 saltines from yesterday).  

Also...huge shout of of thanks to all of those who have sent us Uber cards...they are coming in SO handy!  It is not easy being gluten free at a hospital.  Most meals at the RMH I can't eat so today my one and only meal came from a wonderful Cuban place we found.  This picture doesn't do it justice...but oh my word it... was delicious!  And delivered to the hospital for us...AMAZING!!!

Main prayer requests now...

That his heart rhythm would return to normal.  At this point it feels like it would take a miracle...but we know that is possible.  The first 2 days they seemed confident it would, today not so much.  There are a lot of reasons why they are thinking this, and I get it.  With the way his specific heart is set up we were told for day one (like in the womb) that he had a higher chance of needing one put in one day.   Still...lets pray his heart can beat correctly on it's own!

Pain management.  Stephen internalizes so much of his pain.  Rather than speak u he just shuts his eyes and tolerates it.  It can be hard sometimes to know if he is sleeping, or just huts.  Pray we can stay on top of the pain so his eyes will be open more!  

He did develop a pleural effusion (excess fluid built up around lung) so pray that it would drain quickly and go away without causing any trouble.  These are very normal after this surgery, but can leas to lengthy hospital stays and difficult edit restrictions!  

Rest for both Joe and I.  Sleep doesn't come easy when this is your current reality.  But prayers that we would remain healthy and somewhat rested is appreciated!

Thank you all for waking this journey with us!!!  We appreciate your prayers SO SO SO much!!!!  God is good and we know he will use all of the this for His glory!

PS  If anyone wants to text, message or email encouraging videos for Stephen I am sure he would LOVE them!  We showed him one today and it lit up his face!!!  

Day 1 in Pictures...and a few words

I am entirely too tired to write much, but I have so much to say.  So for now I will sum up the day with pictures and a few words.

Our smiley boy walking over to the hospital!

Pre-op saturations...you can see the 72 on the left of the screen!

Going through Pro-op like a champ!

He was wheeled away into surgery just before 1pm...not my favorite part.  It is so, so , so hard to watch your baby  go.

He came back intubated (on breathing machine) which is normal.  We finally got to see him at 8:30 pm.  Surgeon said all went well.  They did decide to place some permanent pace maker wires inside of him so if (or when) in the future he needs a permanent pace maker put in it will now NOT have to be an open heart procedure...pretty amazing!

His oxygen saturations after surgery...96!  

He took a bit longer to wake up...but that has tended to be his norm.  He is VERY sensitive to sedation meds!

Finally extubated and breathing on his own!  You can see to the right of his neck he has a TT line that is sutured in and goes directly to his heart (theres one on the left side as well)  His bandage looks great!  He has 2 chest tubes, and in between them are the temporary pace maker wires (which are currently hooked up to an external pace maker and are completely pacing his heart while he in in junction.  His left hand also has an aerial line and his right a peripheral (that is capped off)

You can see how pink his lips are though!!!

Such a long, emotional day.  Still a long road to go.  But praising God for his protection over sweet Stephen!!!
Please continue to pray for a speedy and uneventful recovery.  Pray his lungs would remain clear and that his heart would return to normal rhythm.  And pray for his pain management...moving hurts...and he has to move!
Bless you all!

Just Went Back...

Stephen was wheeled back into the OR just before 1pm (slight delay in schedule).  Please pray that the Holy Sprit would fill that room, guide the surgeons and team of people working on him, and be with our precious boy.  The surgery should take about 5 hours, and we will hopefully be able to see him a couple hours after that.  Prayers over these next few hours (day) are greatly appreciated.

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!