Wednesday, April 30, 2014

Quarantine: Day 10 (The One with E's 1st Birthday)

Quarantine day 10, also known as E's actual 1st birthday, was a huge success! I started out my morning by taking LO to school. My last time dropping her off for 1st grade! Hubs usually takes her, so it was a fun change in our routine for today.

Not long after that, I enjoyed lots of love and cuddles with this little birthday boy of mine. He loves sticking his tongue out these days... silly boy!

Then it was time for birthday pancakes! I can't believe he's ONE!

Love my cutie!

My boy went to town on his first pancake! No need to cut it up, mom. I've got this.

Seriously, we have yet to find a food this boy won't scarf down!

I had big lunch plans with my girl today. Seems she won a special Subway lunch (this one deserves its own blog post) but I was worried it would happen after we leave for Charleston, so I promised her I would bring her lunch from Subway today. We sat with some of her best friends and she seemed to really enjoy it! Funny thing was I got a call this evening from the school that they are going to have her special lunch this Friday since they knew she'd be leaving. What a special surprise! Two Subway lunches in one week? That never happens!

Here's my perfectly posed sweetheart with a few of her besties.

Dinner was so much fun tonight!

This boy loves his big sis!

Mmmmmmm... mashed potatoes!

Love my silly Chase!

After dinner we had a little family celebration for E's big day. Of course we started with the wonderful cake LO and Chase created for him.

Yay! Cake time!

I love love love E's face in this pic! Not sure if the fire was a little too close for his liking? Or maybe he too was overwhelmed by the number of sprinkles on one single cake?

Eating the cake, of course, was no problem! He comes from a family armed with more sweet-tooths (teeth?) than one could imagine!

Once the cake was all gone cleaned up, we brought out one last birthday present. You can see he was thrilled.

He really loved his new ride-on toy! And I just love this happy baby of mine!

My sweet boy!

Other highlights of the day? I was able to get the letter from LO's principal that we were waiting on, so YAY! Also, I finished up Chase's Toy Story hospital gown. But other than that, we're still in a bit of a holding pattern...

Tuesday, April 29, 2014

Quarantine: Day 9

Tuesday has been a pretty stellar day! A big answer to prayer, some mommy/daughter fun, cake decorating and more!

Can we just start out with the fact that this little gem is going to be ONE tomorrow? I cannot even believe it! He's such an amazing baby -- pretty much a wonderful sleeper and eater since Day 1. His personality is so laid back and chill... I love it! He is at SUCH a fun age right now and I truly cannot get enough of him!!!

I didn't have as much time as I would've liked to hit the sewing today, but I did start on Chase's Toy Story gown and am about 80% finished. I should be able to knock it out tomorrow, bringing my completed hospital gown count to 4. There's something to be said for "slow & steady," right? ;)

One more important surgery prep task was completed from my list today: Chase's treasure box! This bad boy is full of all new toys, games, activities, snacks, DVDs, puzzles and pretty much anything I could think of that would distract him and/or pass the time following his surgery. I also threw in a few things to help open up his lungs, an important post-surgery activity, such as bubbles and a pinwheel. Some of the items are wrapped to make it more fun for him (as much "fun" as one could expect given the circumstances), some not. I'm really hopeful this lifts his spirits a bit considering everything he's going to be put through.


Here's a pic of my sweet little guy at lunch today. I gotta say... those horizontal stripes do nothing for that belly! Ha!

LO had a great day at school and earned her last two marbles (a behavior thing we do at home). SO... this means she could finally get Rarity from Build-A-Bear! Hubs and I discussed whether or not it would be okay to take her to the mall considering our current quarantine status (new germs, a store mainly frequented by children, etc.), but we didn't want to withhold the reward she had earned from her, so she and I hit the mall!

The best part? There was literally one child in the store when we arrived, and she was checking out. There were ZERO children/shoppers/people in the store during our entire visit with the exception of us and the one employee! Perfect!

She's so happy!

My beautiful girl with her newest pony addition!!

After Build-A-Bear, we hit up Auntie Annie's to share some pretzel bites and an Icee. It was so wonderful to spend some quality time with my best girl!

After dinner, I let the kids decorate a cake for E's birthday tomorrow. They enjoyed it. And they love sprinkles.

Oh yes. The sprinkles.

I've saved the best part for last... the big answer to prayer! While I was wrapping gifts for Chase's treasure box, I missed a call from Allstate. Long story short? The woman who hit my Sienna back on April 7th, who had been avoiding calls from her insurance company for the past 3 weeks, finally contacted them this morning. She admitted responsibility for the incident, which allowed her insurance company to finally assume liability and pay for the replacement of the rear passenger door on my Sienna! Hallelujah! This is seriously such a HUGE relief and a HUGE answer to prayer! It literally almost made me sick to think that we would be responsible for the repairs considering the accident was not at all my fault. I'll be so grateful to have my car fixed once we return following Chase's surgery. Thank you, Lord!

Really, the only other outstanding issue/concern I have left---you know, other than our son's 3rd heart surgery---is finalizing LO's schooling situation. We were supposed to have a letter from her current school principal indicating she's "on target" for 2nd grade yesterday. After leaving her a voicemail yesterday followed by an email today, and we finally got a message from the school secretary telling us she's out of school Monday and Tuesday for training, but will be back on Wednesday. Sheesh. So we're hopeful we'll finally see this letter tomorrow. It will be helpful to have it in her file, but isn't something we want to totally rely on. We like options. ;)

For our Plan B, I mailed the membership application and fee to the homeschool association we're planning to join for the month of May to finish out LO's 1st grade year, but haven't heard from them to ensure we're "official" yet. Ugh. I don't like something this important still being up in the air and unsettled, especially with everything we have coming up in the next few weeks. But I'm confident we're doing the right things, we've done everything we can and that everything is going to be just fine.

So YAY for a great Day 9 of Quarantine!

Monday, April 28, 2014

Quarantine: Day 8

Well our first week of Fontan quarantine is over, and I'm happy to report we survived! Seriously though, I'm thankful we've all made it through the week without any signs or symptoms of illness. I cannot express how incredibly important it is that all of us -- but most specifically Chase -- stay healthy in the days leading up to his surgery. Thank you, Lord, for your hand of protection and wellness on my family!

Today had to have been the best start of just about any day ever. Of course I had to drag myself out of bed long enough to do LO's hair before school and slather her with hugs and kisses and well-wishes on her last Monday of 1st grade (at her current school), but it didn't take long before I was back in my nice, warm bed feeding E while Chase watched a movie downstairs. That sweet baby of mine nursed/slept for a good hour and a half, and followed that up by falling asleep cuddled up next to me. He didn't wake up until after 10:00 AM, so I essentially got to sleep in and it was wonderful! Seriously, is there anything better than a morning nap snuggled next to this?

Hubs is working from home this week (again, to limit exposure to germs) so he was working away while Chase entertained himself with movies and some Wii U. Such a great, lazy morning!

After a late breakfast, we played for a bit and then I hit my sewing room to finish a few of my current hospital gown projects. I'm happy to report I now have 3 hospital gowns finished for Chase (don't mind the flower print hanging in the background... that's a dress in progress for LO)! I have 2 more gowns to make, which is good since I'm finding myself in a sort of "holding pattern" right now. I've got my lists of things to do, things to pack, etc., but I can't really start the process of packing until we get closer to our departure date. So for now, I guess it's just family fun and not much else!

Hubs worked in the yard this afternoon to even out the new sod we had put in over the weekend (the rest of which we hope will be here tomorrow) while LO and Chase played in the sprinkler. I tried to take some pics of them from my upstairs window, but they were horrible. My bad!

After dinner, we loaded up the kids in the car for a change of scenery and ventured out of the house. Destination? One of my favorite places EVER:

I enjoyed an amazing 45 minutes of "me" time while hubs stayed in the car with the kids, watching a movie. It was glorious!!!!! And to top off the night? A quick run through a nearby drive-thru, also one of my FAVES:

I don't care if I'm 8 or 88, pink bubblegum ice cream from Baskin-Robbins will ALWAYS be my favorite! True story!

Sunday, April 27, 2014

Quarantine: Day 7

Day 7 has been a good one! I was able to go to church this morning -- alone, unfortunately, due to our quarantine status -- and thoroughly enjoyed what was my last Sunday singing in the choir for some time. The Pastor's message was wonderful and left me with a new way to look at our current circumstances.

The verses below (emphasis added) reminded me that I am in no way, shape or form responsible for the outcome of the hardships I am experiencing in my life. What a relief, right? This is all in God's hands. How foolish of me to ever think that I had some level of control or say in what happens to me or my family. He knows we are weak. It is only in Him that we find the strength we need to overcome the trials of life.
"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." - 2 Corinthians 12:9-10
Of course! I can vividly recall the helpless feeling I had as we handed over our 7-day-old son to the surgeon and his team for Chase's first life-saving open heart surgery on November 2, 2009. I've never felt more weak in my entire life than at that very moment. And yet, He was faithful! He sustained me, and He brought Chase through that difficult time. And as if that weren't enough, He did it all again 4 months later for his second heart surgery! God is faithful. His sustaining grace comes to us as we need it.
"I will praise the Lord, who counsels me;
even at night my heart instructs me.
I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.
Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
because you will not abandon me to the realm of the dead,
nor will you let your faithful one see decay.
You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand." - Psalms 16:7-11
Wow. Just what I needed, right when I needed it. Thanks be to God! I am so grateful for a renewed focus and filling of His spirit as we prepare for Chase's Fontan in just over a week.

So of course church was great this morning, but I also enjoyed some family fun times, too! After lunch, the kids and I went outside to wash hubs' Jeep as this was something I knew we needed to do. The kids were actually super helpful! Give LO a bottle of Armor All and a cloth, then watch out! She knocked out the cleaning while I did the vacuuming. It wasn't long before the kids gave up on our chore and hit the playground across the street. But once I busted out the hose and bucket, they came running back! They were very "helpful" with the washing and rinsing, but Chase was a wizard with the drying! See? Please note the fact that his shorts are wet, heavy and falling down slightly. You'll understand why in a moment.

My smiley, happy helper!

Still helping---uh... wait. Something seems wrong here.

Yes, that's a Minion you see peeking out beneath Chase's shirt. Silly boy! He sure was committed to his job! Haha!

E joined us outside for a bit as well and enjoyed the fresh (albeit hot) air!

I was able to work on more sewing during nap time, and Chase approved the change to the length of his Super Mario hospital gown. He tried it on over his t-shirt and wore it for hours. Too cute! I'm also almost finished with his Mickey Mouse one, and have the materials for Toy Story and Despicable Me gowns if I find the time.

We ended the day with a family movie and pizza, followed by homemade chocolate chunk cookies! It was a wonderful day! I'm so very thankful for God's message to me today and am so very blessed by my amazing family!

Thanks a bunch to those of you who are following along with us. I figure some of the details may not be the most exciting blogging material, but I'm thankful to have this time in our lives documented to look back on in the future. I'm so glad I have this blog to share Chase's journey with him when he's old enough to understand all of these details. He's been through so much and I couldn't be more blessed to walk this road by his side!

Saturday, April 26, 2014

Quarantine: Day 6 (The One with HUGE NEWS from MUSC!)

Day 6 of quarantine was a pretty good day! I was up early with the kids and managed to get a lot of housework done, which was a huge relief. Then it was on to LO's last soccer game of the season, ThankYouJesus! She was excited to see Gramma & PaPa as well as her 1st grade teacher! And of course Chase was happy to be out of the house. But my goodness was it ever a hot day today! Temps in the 80s and this mama didn't even grab the sunscreen! #momfail

LO with her teacher

We also had the joy of watching a little entertainment in our backyard. Previously there was a huge dip in the yard for drainage purposes, so hubs put in a drain and some piping and the builders put down some top soil to level out our yard.

Today they came out to put the sod down. It looks so much better! Well, except that they ran out of sod, so we have a lovely little "dirt island" right in the middle! LOL! I think they're supposed to have that taken care of next Tuesday or so? Too funny.

I also managed to squeeze in tiny little moments of sewing here and there, which was super great since I'm desperate to make a few hospital gowns for Chase. I finished my very first one a few days ago, but really want to knock out the Super Mario and Despicable Me gowns before we leave... especially since I told him the Super Mario gown has super powers! He tried it on for me and we agreed it was a tad too long (an easy fix!), but he was happy to wear it (over his pj's) and "play Mario" for a while before bed. It was too cute!

I've saved the best for last... the HUGE NEWS from MUSC!

I received an exciting email from one of the Pediatric Cardiologists on staff at MUSC. He's been my go-to resource to email for questions about Chase, especially when it comes to a hospital stay, and he responded to my latest bout of inquiries today. We were concerned about having to leave Chase's side when a new case rolls into the PCICU and also from 7:00 - 8:30 AM and PM every day for rounds/shift change. This wasn't critical when Chase was an infant following his first two heart surgeries, but it's a pretty big deal this time around now that he's old enough to know when we're there and when we're not. Seriously, hubs and I were having slight panic attacks at the very thought of dealing with this frustrating policy during Chase's post-op period. But we were very pleased to hear that MUSC has worked hard on family-centered care over the last year or so and no longer routinely make families leave for cases and always welcomes families on rounds! This is a huge answer to prayer!!! We were also happy to hear the typical ICU stay following the Fontan is 2-3 days (before moving to the step-down floor on 8D), with an average total hospital stay of approximately 2 weeks. Of course there are a zillion variables and possible complications that could come into play, but we're so very hopeful that we just might be able to experience a 2 week admission!

One of the other GINORMOUS reliefs I experienced today happened when I took a quick peek at the Pediatric Cardiothoracic Surgery operative results from MUSC. The last time (a month or so ago) when I checked, the results were from 2007. Obviously that wasn't very helpful, right? So I was pleasantly surprised to see the results were now posted for patients from 2009-2013 -- this even includes Chase! I'm so pleased that we are already through the Norwood (Stage I) and Bi-Directional Glenn (Stage II), but would you take a look at the operative results for the Fontan (Stage III) that Chase will be undergoing in just under 2 weeks at MUSC?! Seriously! Take a look!

Source: Operative Results for the Pediatric Cardiac Surgery Program

I cannot tell you what a relief and answer to prayer finding these updated operative results has been for me. One of the posts I've been avoiding writing is the one where I share the real thoughts, feelings and fears in my heart and mind heading into this surgery. I can't bring myself to put those thoughts out there for all of the world to read, so let's just sum it up by saying I've been afraid. So very afraid for the life of my son. So very afraid for the successful outcome of this surgery.

But to see that 100% of the patients at MUSC who underwent the Fontan survived???


We continue to covet your prayers in the weeks ahead as we prepare for Chase's surgery, for LO's adjustment to homeschooling, and to balancing life between Chase in the hospital and LO and E at the rental house. I cannot say Thank You enough to those of you who have reached out to us to ask how you can help us through this journey. It's so comforting to know we have a community of loved ones rallying around us, willing to help us and constantly lifting us up in prayer. We are so very blessed!

Quarantine: Day 5

Day 5 of quarantine is in the books! Things have really started looking up for me. Well, I mean, nothing has really changed from my massive To Do list, but I definitely feel as though God has brought His peace into my heart and mind with everything going on now and in the weeks ahead.

Friday was a rather quiet, slow day, but it was also quite productive! Lots of laundry, a little cleaning, but the biggest/best thing is that I was able to run out and pick up some little toys, games, puzzles, etc. to put into the "Treasure Box" for Chase that we'll be bringing to the hospital. It's a combination of entertainment options and rewards for the many uncomfortable procedures he will be going through. Having all of that purchased and ready to wrap was a big relief to me.

I also spent a good deal of time on the packing lists and shopping lists. There is So. Much. Stuff. to bring when you're basically relocating a family of 5 for an unknown duration of time! But now I have my lists and it's just a matter of thinking through what we're forgetting. Thankfully there are plenty of stores near our rental home, so I'm not terribly worried.

Turns out I didn't take any pictures yesterday, so I guess I don't have anything else to share! It was a productive day with plenty of family time... perfect!!!

Hope everyone is enjoying the new Chase-approved blog theme! ;)

Friday, April 25, 2014

Blog Theme

I figured that since the blog will be focused on Chase for at least the next month, I ought to update it to some of Chase's favorites! He's big into all things Super Mario plus a wee bit of Despicable Me minions, so hope this doesn't get too overwhelming to everyone! It's Chase-approved, and that's all that matters to me!


Quarantine: Day 4

Well, wouldn't ya know it? Brain dumping the poo-poo platter of my life on the blog yesterday was somewhat refreshing and liberating! I've felt a sense of relief as if I was finally able to let all of that junk just "go" (Frozen reference not intended) and start moving forward with refocused priorities and an action plan for my next steps to get my sweet boy through surgery.

Chase and I enjoyed playing some games on the computer together while LO was at school and E was napping. It was wonderful to spend time with him rather than run around working on my To Do list.

LO had her last soccer practice last night ((insert collective sigh of relief here)) with her last game coming up this Saturday. Yes, she dresses herself and obviously decided to do her hair herself as well.

The boys and I had a blast watching her from the temperature-controlled comfort of the car.

And this is super random, but in the process of locating mine and hubs' bachelors degrees for our bout of homeschooling next month, some priceless gems from my childhood were discovered. I couldn't help but find the irony in a pic of my at 2 years old playing with a Fisher-Price Children's Hospital of all things.

So on to Day 5 we go!

Thursday, April 24, 2014

Quarantine: Day 3 (The One Where I Complain... a lot!)

Hmmph! Day 3 didn't go as planned... not by a long shot! I gotta tell ya, for some reason, I feel like I have a ginormous target on my back and everyone is coming out of the woodwork to shoot at me. It's stuff from the mundane annoyances to the "oh crap this is a really big deal" kind of stuff. It's extra frustrating because I've been doing everything in my power since we learned of Chase's Fontan surgery date to ensure by this time... about 2 weeks out from surgery (but preferably a month out)... my focus would be on my son, and ONLY my son.

But alas, the world won't have it be so! Let's recap -- in no particular order -- some of the drama, so I can remember all of the battles I had to get through before I could focus on being the mom I need to be for my son as he prepares for his third heart surgery:

1. I was in a car accident on April 7th. It was not in ANY way my fault. A woman pulled out making an illegal turn, right into the side of my Sienna. I obtained her insurance info and we had an amicable discussion after it took place. I filed a claim with her insurance about an hour later. Fast-forward 2 1/2 weeks later... she will not respond to the calls from her insurance company. They cannot locate her or get into contact with her. This means they can't assume liability for the accident. They will continue to try for 30 days. At that point?? I HAVE TO FILE IT WITH MY OWN INSURANCE, and am subject to an$200-$500 deductible for the repairs to my vehicle caused by someone else. Plus the joy of arranging a rental (x3 car seats) for upwards of a week while they replace the sliding passenger door on my Sienna. I don't get it! It frustrates me that this happened TO me and yet I'm the one who has to pay -- in every sense of the word. Of course this one will be on the docket for after we return from Chase's surgery. I'm praying the door doesn't completely fail or fall off before then!

2. Ugh. This one doesn't warrant an explanation, but let's just say you have someone such as myself with an earnest, genuine desire to HELP someone with a situation, only to be blindsided by the most inappropriate and insensitive response I've ever seen. I learned a valuable, eye-opening lesson on why people choose not to volunteer, so I consider that a win!

3. Geez. LO's school plan. We're taking her with us when we travel for Chase's surgery next month. Therefore she'll miss several days of school. I first approached the Vice Principal at her school in AUGUST 2013 and was told it "wouldn't be an issue" since it's for medical reasons. Then, beginning in February, I attempted to confirm with the Principal what we need to do to ensure the situation is handled appropriately according to the school's administrative guidelines. I don't have any desire to get into the details (emails we've sent with no response, multiple face-to-face meetings, my contacting the Director of Attendance and the Superintendent of the entire school district and much, much more!) only to be told YESTERDAY that they want to meet with us on FRIDAY to discuss our "requests." As in, one week before her absences are slated to begin. I've been in contact with this school for EIGHT MONTHS and they wait until ONE WEEK before her leave begins to discuss it with us.

Not happening.

Long story short? We now have the privilege of withdrawing her from public school, paying for an annual membership with a homeschool association (that we will use for one month), purchasing curriculum for her to complete one month of her 1st grade year, then placing the added burden of ensuring she does her "homeschooling" on her unsuspecting grandparents who will be keeping her and E while we're at the hospital with Chase. All this so we have a paper trail that confirms she successfully completed the 1st grade ((sorry, Gramma, if you're reading this as we haven't gotten to the point of letting you in on all of the latest developments in this drama!)). So wow. This is all dumped on my plate after I've been trying for months to get a simple resolution from her school. I am so overwhelmed with this I can't even tell you.

4. Preparing a family of 5 to relocate 4 hours away from home for a month. You'd think not much would be involved in that, huh? Lol! Packing lists, shopping, packing, putting a hold on the mail, ensuring we have everything we need for a baby, a now homeschooled 6-year-old, and an undetermined length of a hospital stay for our son. Oh, and stuff for me as well (thankfully hubs manages his own packing). Everything from 1st grade curriculum books, to a pack n' play to a treat box of toys for our son to have while dealing with the recovery from heart surgery and all of the pokes, prods, echos, x-rays, chest tubes, pacing wires, IVs, fluid, medications and everything else that consists of.

5. Chase's 3rd heart surgery. Does this one really require any elaboration or discussion? Obviously unless you've been in my shoes, you have no idea whatsoever how to prepare for this... how to live with this. It's too much to put into words.

6. My baby officially turns ONE in 6 days. For all intents and purposes, he will be our LAST baby. As you can imagine, there are a lot of emotions that come along with this milestone for a mommy. My baby will no longer be a baby. This is a big deal! Throw some added hormones into the mix and this alone is enough to turn a mama into a basket case!

7. Related to #6 above... I'm still nursing E in the morning and at night. Essentially 8AM and 8PM everyday. I've never been this successful with breastfeeding the other two, so this is a HUGE deal to me. Now, imagine I'm at the hospital with Chase and not at the rental house with E. How will that work exactly? My only option is to pump at the hospital and have hubs courier it to the house. That means spending time away from Chase to ensure I can keep up with nursing for E. I'm afraid I won't be able to make the necessary commitment to pumping with everything else that will be going on, and the decision to stop nursing will be made for me. I don't like being in this situation! On the one hand, I'm happy we made it through his first year. On the other hand, had we not had a heart surgery to contend with, I would've wanted to continue with how things are and continue nursing E until I made the choice to stop. Again, imagine all of the hormones and emotions in play here. Then add #s 1-6 above to the mix! Can you see why I'm having such a hard time right now with all of this coming at me at once?

Sigh. I'm not really trying to vent with a "woe is me" kind of vibe here. I'm just sharing my heart with my trusted blog readers while also documenting this time in my life so I can read through it later and see how God brought me through it all. Those of you who have followed my writings for any length of time know I keep it pretty real on here. I'm lucky to have this outlet, it makes a great "journal" for me to refer back to and I'm so thankful for the prayerful support and love of both my family & friends who know us personally, as well as those of you who I've never met but still support us through your thoughts and prayers.

On a brighter note, we did have a few moments of fun yesterday!

E's last bottle from my frozen stash. It was a bittersweet moment for sure!

This one is technically from Day 4 (today), but LO looked so cute I couldn't help but share!

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