Here We Come Disney World!

This has taken much longer than it should have to get posted - I feel like I am a month behind on everything these days!

The morning of departure for Disney World started with a cold and cough for Cole. Oh well, had to happen at some point so we moved on with our morning. I was like Clark Griswold going to get a Christmas tree. This trip was happening and everybody was going to catch the joyful spirit because I had enough for everybody if they didn't have it. Forgotten camera cords, coffee getting postponed and drank way later than it should be in the morning, colds, Travel Cole, Travel Ava and Travel Lila, dammit.

So the first thing is we forgot to get gas, or make that I forgot to get gas because I'm the one who drives my car. We stopped at the Love's at the end of Sutton Rd. I noticed while sitting there waiting for the tank to fill up that I was feeling pretty good about remembering some of the harder things that usually get forgotten at home and then I sucked in a breath so hard I choked on my luke warm coffee. I realized I had forgotten the battery chargers for the digital and video cameras.

I already know we are driving back home for the forgotten battery chargers, but I asked anyway "Should we drive back?" I was trying to get my feelers out to play this safe and act like it was no big deal just in case it brought up non joyful talk and feelings. The conversation went a little like this: "I don't know, how important is it" "I don't know, pretty important," "Can we make it through the trip without it." "Probably, maybe, not really."

We knew from previous trips that a forgotten battery charger would land us with an amazing photo opportunity and then the camera screen will say "Battery Life Expired." There goes that once in a lifetime moment. "Ok, yeah so we should go back and get it." In the time we took to debate, we could could have been at the house already. So what that we tacked on an extra 15 minutes, still no joy stealing allowed.



Finally after driving an 8 hour drive that usually turns into 8ish to 11ish hours for us with small children, we did not enter the enchanting Walt Disney World Entrance on the first day in Florida. We went straight to the time share. We all needed to be away from the car and let our mushy brains get settled before venturing into the magical world of Disney World.



I am just going to fill you in early here so you know what led to bad pictures and bad monetary decisions to get what pictures we could. Our very loved and needed camera ate up the pavers that so beautifully cover The Animal Kingdom over in dinosaur land the first day of being in Disney World. It didn't even bounce:( It landed lens first, but I had hope that it was a tough Nikon. It was not, but when you think about it, what camera would be that tough? It didn't even make it to lunch time. So no more pictures and no camera. All I could see flashing forward was a whole week we had left at the happiest place on Earth and all the "moments" I was going to miss because our camera had met it's maker. I think my eye started twitching.

What led to this disaster?

I was going to take a picture of the kids with a statue of a dinosaur and Cole went one way and Ava another and Lila was strapped in the stroller with all of our belongings piled on it. I needed to go after Ava one way and Cole another and stay with Lila at the stroller. Matt was a few yards away walking towards us after paying for the first purchase of the trip, more toys or figurines that will probably end up loved for about two weeks and then go into the "I used to be loved" pile. He saw it all happen. He probably had a great view of our camera dropping straight to the ground from my hands. My brain and body must have froze because I didn't even lunge for the camera. In the one second it took to fall I saw our lovely children leaving and the one decision my brain made in autopilot was our children were more important to catch. I was kind of hoping part of me would have chosen the camera. If I were a mommy snake or mommy shark I could have saved our camera. We might or might not have our children, but by george we would have pictures, but now that I think about it then we might not have our children in those pictures.

I held back tears the rest of the day for destroying our camera. Matt was very gracious. Even the ice cream cone we all shared that cost as much as a steak dinner didn't help the wounds I was licking.

After a day of being on the verge of tears and trying to take pictures of special moments with Matt's camera phone, and trying to be thankful that we at least had that, I had to get over it and remember why we were there and what we were celebrating.

For those of you who didn't know why we were taking this trip and when we took it, it was to celebrate no more surgeries for Cole and celebrating every day of life, especially after the scare Cole gave us. Since then we have been reminded of the reality of Cole possibly having a stroke coming out of surgery or after surgery. We know of one child who stroked a few times that had surgery the same time as Cole and is the same age as Cole and is alive and doing ok and another who stroked recently out of surgery and passed away, he was 17. We don't want to stay in that mindset 100%of the time, but we tend to get comfortable in life and get very busy and forget how precious our minutes are with each other. We also wanted to celebrate that even though we don't always like each other as a family, we always love each other:)





To start some of the celebrating, we ate at Chef Mickey's which is character dining with Mickey, Goofy, Pluto, Donald, and Minnie. They had asked at the beginning of the meal if we were celebrating anything special and we told them what we were celebrating and they brought this special cupcake. The Mickey on there is made of chocolate, yes boys and girls, they think of everything to make it impossible to say no to every little thing they offer that will make the trip that much more special:). Mickey and the gang and the wait staff came around and sang a song and waved napkins. It was all very festive but about 30 seconds into sitting down Matt and I had the table of children that made everyone feel extremely proud of their children and glad they did not have our children. Matt and I feverishly tried to hush them and talk sternly through gritted teeth and tight lips and warning eyes. I tried every kind of bribe, every kind of food, snacks, dum dum lollipops etc..
I also was having a wardrobe malfuction in the middle of all this. I had worn the wrong shirt to be taking care of a 5, 2, and 1 year old that were being a 5, 2, and 1year old. There was bra and skin everywhere. I was sweating. My eye was starting to twitch again. It was all very ugly. Matt had angry eyes and Matt never has angry eyes. It was all very non-Disney World behavior.



They did have the best Mickey shaped waffles though!


Matt and I felt very defeated after that breakfast - like what had we gotten ourselves into for 5 more days! We were so outnumbered and the enemies (our three children) were relentless! We also knew it was us against them which makes you want to wave the white flag immediately. It did make Matt and I draw close knowing we were all each other had:)

Then we had a light bulb go off as to why they were unusually bad at a place to eat, other than their ages. Cole had not slept because he had a cold and by then Lila had already started the cold too. They didn't sleep the night before. So no sleep from coughing and runny noses and getting settled into new sleeping quarters made for a rough morning.

It's so hard when you want those special moments to be really special, but the reality is normal life still happens, even at Disney World. The sooner you accept this the better off you are in your trip. I thought I had prepared myself before ever leaving our house. I went into it knowing there were going to be ugly moments but nothing could prepare us for some of those moments our children gave us. They were like little, ugly, unwanted boogers on the tip of their finger that make you gag. We wanted to walk away until they acted like they have some sense.

So next was the Magic Kingdom. Off to meet more of our children's movie stars and ride flying, spinning, and floating rides.

It is magical but don't think the Griffin children can't keep it real even in Disney. Most of the time we laughed at how we must look to the rest of Disney because standing in line for anything usually looked or sounded like this...................
I would hold Lila and the diaper bag, loaded down to survive Disney for the day, Matt would hold Ava's hand, Matt and I would both try to corral Cole using a leg or one of our other children or the diaper bag, Lila would have a diaper or something else from the diaper bag in her mouth and the rest strewn all over the ground.

We usually sounded like this.........

stand still, stand up, stop licking the hand rail, stop hanging on the chain for the line, Matt hold Lila, Matt get Cole he's trying to climb up that man's leg, Cole stop grabbing the ladies bum in front of us, Cole stop screaming, Cole stop hitting Ava, Ava stop provoking Cole, Mom Cole's hitting me again, You know what Ava I don't think I have the energy to care anymore, Lila stop kicking Cole in the head.


But........ what made some of those crazy moments worth it were, the faces on our babies faces! This trip wasn't about mommy and daddy relaxing. It was about helping dreams come true and nobody else is going to do that, nor should they, for our children. Getting to give them this experience and watch dreams come true felt like a huge gift to be given. We watched their little faces look in wonder as they couldn't believe what they were seeing or being so excited they couldn't stand still and would run in place and clap their hands.






Those faces and reactions were why we could walk and walk and walk and carry and walk and push the stroller and walk and carry some more. It was like musical mommy and daddy and stroller. Ava and Lila would be in there because Cole wanted to walk. Then Cole didn't want to walk but neither did Ava. So we would unstrap Lila and carry Lila. Then we would trade who carried and who pushed. Then every few feet someone was thirsty. Then when our arms were shaking with fatigue from the carrying we would move Ava out and put Lila and Cole in and let Ava sit on the front and that is how we made Disney 2010 happen. We think after it was all said and done we were there 2 days too long.


We knew Woody, Jesse, Mickey and the gang would make both Ava and Cole happy but we were unsure of what Cole would think of waiting in line to meet princesses.


Well, we met Cole's first love, Princess Tiana. This is what boys in love look like,




and then the Belle in life comes along,







and then the Ariel in life comes along,




and then the Cinderella in life come's along,






I'm a little embarrassed as a mom to say he was like Puss n' Boots in Shrek the Third when he is at the boat dock with all the girl cats and he's saying "I love you, and I love you, and I love you, and I definitely love you." He went to each princess he met and it was like the one before never existed. He was most bashful with Cinderella. He wouldn't go up to her. Ava did because this is her favorite princess, but at the very end Cole ran back and jumped in her arms and cut off another child who was taking their turn:(


and then the Repunzel in life comes along, but those boys seem go back to whoever their Cinderella is because we saw her again and he was the same way.




I totally thought it would be Repunzel! She was beautiful! Just shows beauty is in the eye of the beholder.

The one thing we love about this time of year at Disney is everything being decorated for Christmas and we do Mickey's Very Merry Christmas. Even Matt and I are in awe. The castle is decorated with icicle lights from top to bottom and it changes colors every now and then. There is real snow made by snow machines that falls softly over Main Street as you walk down the middle of all the shops. There is a big Christmas parade with all the characters and Santa is at the end with his reindeer. There is a firework show at the end over the castle. There is a lot more but it is amazing.




"To Infinity and Beyond!"

This was the one "movie star" Cole had talked about and couldn't wait to go to Disney World to see. It was amazing to get to see this particular dream come true! Giving him new memories to fill his eyes and ears and mind with helped us as parents heal a little from watching what he has gone through for three years.




Thank you to everyone who has supported us in love and friendship. Thank you for praying, thank you for crying tears we didn't have in us to cry at times, thank you for crying with us, thank you for realizing what this time for us as a family meant, thank you for making our story personal to you when there are so many families who have faced or are facing some scary moments in their lives.

Good News Friday

Cole and I made our way downtown again to Sanger Heart & Vascular Institute on Friday the 15th. It was a weird feeling to travel 77 to 277 to the exit you would get off to go to CMC Main or Levine and not begoing to Levine's this time, but it was such a great reminder that we have come a long way in a short time and our sweet blonde headed boy was in his carseat with me and not in the hospital for surgery or visiting or living at the hospital with Cole.

When we went to check in I didn't know if Cole would freak out just seeing doctors and nurses after the way he felt a couple of weeks ago, but he was as calm as could be and was showing off his cool Buzz Lightyear shirt to the staff! Auntie K found one that looks like the top of the Buzz costume so Cole has barely let me take it off to wash it.

So he hopped right on the scale with no sudden outbursts of high pitch screaming. He even allowed them to measure his height.

We moved on to our little room to have oxygen levels checked and blood pressure checked before Dr. Bensky, Cole's cardiologist, came in.

Even on a good day with no surgeries just having been done does Cole ever let them do oxygen levels and blood pressure without protesting.
He sat there quiet and even tried to give them a hand and assist them with it all. He was so cooperative, such a little gentleman:)

Dr. Bensky has always been one of Cole's favorite doctors, but lately no one in the medical field could be trusted from Cole's point of view, but Cole was quiet and still while they checked him.

Dr. Bensky said "everything sounds good and strong." Sometimes these single ventrical heart babies can have weak valves. He said Cole looks good and is healing well! We, along with you all have prayed since before Cole was born that even though he was given this special heart that it would be strong and healthy andthat he would be healthy and strong. We used to be confused because we assumed heart defects automatically meant a weak heart, but the best way to describe Cole's heart is, his is strong it's just the plumbing is very screwed up and missing some parts.

We even got to get rid of one whole medicine all together, Aldactone. We only have to take one tablet of baby aspirin a day now and no more 3 times a day for the Lasix, just two, and twice a day for enalapril. The Lasix won't be forever either, but is a must for a while after any surgery.

I felt like I walked out of there walking on air. I was so happy for Cole and for us as a family to get such good news!

Oh yeah, and Cole's oxygen level was 90!......90! We have never seen those numbers before! It's so good to see Cole being active and not running out of air and having to stop what he's doing to recover .

We are in the home stretch of recovery now! The breast bone is healing up and Cole's immune system will be getting stronger now that it's not fighting so hard to repair itself.

We are really looking forward to this year during the holidays not having to be quarantined from October to some time between April and May for the first time in almost 3 years! It means Ava doesn't have to be pulled out of everything either! It means freedom!

It is an absolute miracle already, and one of our biggest prayers answered, because none of us has even had a cold! That all by itself is a miracle because you know these little ones are petri dishes for all kinds of colds and viruses!

Thank you to everyone who is keeping up with us still! I apologize getting some of these updates to you all so late. Your support deserves better.

Our next visit is October 27th to follow up with Dr. Watts, Cole's surgeon and then we don't go back until December and then they will do a heart eco to see how flow is doing and just check out Cole's special heart to make sure all is working well and strong!

We'll get more pictures up soon!

Our Friend Chuck

So this is Chuck and he was sent to the hospital by a family that Cole loves even more than us or Buzz Lightyear or dum dum lollipops. Chuck sat with Cole and I in the morning when I would have my complimentary waiting room coffee and Cole would have his complimentary apple juice, milk and Fruit Loops from the Family Snack Room.
He sat with us as Cole went through one of the hardest times in his life, but thank God we had and have all of you for our real support! Chuck is nice, but nothing compares to all of you!
Chuck is a laid back guy who hung out in his terry cloth hooded bath towel and matching terry cloth underwear. Chuck was the kind of guy who was more of a listener and not a talker. At times Chuck could get a little annoying because of the creepy smile he constantly had plastered on his face no matter what the situation. It was a little disturbing after a while because it gave him a little Crazy Eyed Clay look, but we kept Chuck around and he came home with us to roost with the other stuffed animals. He's been hanging out in Cole's room getting wrestled with by our lovely tazmanian devil Cole Griffin.

I wanted to let everyone know that Cole has been doing phenominal at home with his recovery. We were told he would self limit. Cole does not possess self limiting. We try to be a voice of reason to him here and there when it's so crazy to us that he is doing so well this early! Thank you Lord, but it's a little nerve wracking. Cole runs around the house chasing Ava with Lila now in Cole's old position of being the follower, or Cole takes running dives into the couch. We stand aside cringing, waiting for something to hurt and make him cry. Every now and then he finds an action that does hurt a little but does not stop him for long.
His latest endeavor is picking the scabs and stitches of the three chest tube sights. That's our boy:)

We can't wait to get the final all clear knowing Cole is mended 100% but in the meantime he is happy and laughing and being a boy!

Here is Cole about to get a blue dum dum lollipop. This is pretty much how Cole is about everything in life! He is my reminder to look for the good in life and try living life like Cole. Everything in life is big and exciting no matter what it is, even as small as getting a dum dum. If Cole can still have that attitude after everything he has gone through the past 2 1/2 years than we should definitely be able to try living life the same way!

Thoughts of a Two Year Old Cole In Hospital

September 22, 2010 seems like it was 6 months ago. There were so many things Cole said in his sweet two year old voice that we wanted to remember because it was his perspective on his time in the hospital.


Someone was visiting and asked where Ava and "Yieya" were.
"I can't find them"

About his chest tubes as he held them up to me by the bulbs.
"Dis right dare hoowt me"

Cole said this to a student nurse that had come in to his room two days in a row.
"Dat da monsta right dare." and pointed at her. Thankfully her back was to us in the room.

After another sleepless night on into 2, 3, 4 a.m. of trying to calm him down from someone coming in to do vitals or drain chest tube bulbs or draw blood, he didn't even want me to be at his bedside to try comforting him and he said "You go over dare mom," "Go Away." and pointed to my sleeping area.

There were nights I would lay on my side balanced on the side rail that had been lowered and a piece of his mattress because it was the only way he would calm down and other times he wanted me to go home.

Whenever Cole needed help throughout the night after he had gotten stuck in a certain position because he couldn't use his arms to push up or his chest tubes had gotten wound around him and pulled at the stitches connected to his skin "Help Mom."


I'm sure I will think of more as time goes by. It's so hard to pull thoughts together right now.

No More Worms

Yesterday Cole and I got up at 5:00 a.m. and headed to Levine Children's Hospital for our 6:00 a.m. appointment to have the chest tubes taken out.
We went to the 5th floor just like all the other times before a procedure. We went through all the questions the anesthesia team needs to ask to ensure the best result for the patient being put under and coming out of anesthesia.
Cole was screaming at anyone who came in the door. So they brought in a medication called Versed. We now know Cole is a happy drunk. He was laughing to himself and slurring "To Infinity and Mond" which is what Buzz says. I would look at him in my arms and he would just cackle. It was good to see him laugh again:) He had the anethesia team and myself laughing so hard there were tears.
Once the Versed was in full effect I was allowed to walk back and be in the room as they put him under. I then went to the 5th floor waiting room like all the other times but this time not for heart procedures and not for hours of waiting. In about 20 minutes they came and got me and took me to Cole's recovery room. They said they had sewn his holes up and to keep the special bandages on for 48 hours to keep any air from getting in just to be safe. They wanted to watch Cole for a bit after the tubes were removed to see how he came out of anesthesia and also to make sure there were no surprises with respiratory emergencies in case air had gotten in the holes from the chest tubes when they removed them.
We had one more x-ray done before we left and it was even more clear of fluid than the day before. Very comforting to go home with!
I took Cole through Dunkin Donuts drive through to celebrate with a chocolate frosted donut with sprinkles. He loves to eat just the chocolate frosting and sprinkles off and then he's done with the rest of it. I looked back at him just to get a good look at having his breast reduction done:) Nah. but it was so good to see him without these extra body parts that had become a part of him for the past two weeks. When I looked back his face was covered in chocolate and it was a glimpse of our Cole before surgery and it made me smile to myself as we drove home. It was a good feeling to be one more step close to getting Cole recovered!
I scooped Cole out of his carseat at home in our new way of life right now with no lifting Cole under his arms until November. I carried him inside with his chocolate face and set him on the couch to clean his face up. As I am cleaning his face he starts singing just like a happy drunk walking home. It was a little "ohhhhhhhh" note held for a long note and he even added a little vibrato at the end and then some things mumbled in song and then a burst of "ohhhhhhhh" and some more "ohhhhh" and then chuckling to himself. He had Sharon and I in tears from laughing. He had to stay put because when he tried to stand up and walk he would start walking to the side in a lean and there is no falling allowed right now in recovery.
He stayed like this for the rest of the day into evening and then when it started wearing off he became a grouchy mean drunk. They did warn us about this at the hospital with it wearing off.

Having those blasted tubes out has made the rest of recovery seem not so overwhelming. With those being gone I think all of us, Cole included, lifted a weight that was able to give us a new perspective on the rest of recovery. We have 4-5 more weeks of hovering over Cole, but we are on the other side of surgery and recovery is going in the right direction.

We have to do clothing that zips or buttons right now so we don't bring his arms over his head. Here is Cole in his Mickey pj's.(they are his G rated pair of Hugh Hefner red pjs minus the bunnies) and BBQ Lays chips that Auntie K brought by for him yesterday after our trip downtown. As you can see from the expression happy drunk is gone.




I wasn't able to make it back home to take Ava to school and go in for her birthday but Matt and I were both able to go to her school to surprise her and pick her up. Matt went back to work and I took Ava to McDonalds or as Cole calls it Mic and Donalds.

Ava did get what she wanted for her birthday and that was Cole home safe from the hospital.

Say Goodbye To The Chest Tubes.....Only Tomorrow

Cole and I took a ride down to Sanger for x-rays and more blood drawing today. We were so close with the fluid volume being down, but close doesn't get chest tubes pulled.
So tomorrow morning, Cole and I have to be at Levine's at 6:00 am. I know disgusting to be up that early, right?
Actually, not so disgusting because one of the mornings that I was sitting there on my bench in the hospital on the 8th floor in room 2 there was a beautiful sky before the sun rose, I'm not sure why I didn't just say sunrise, but the sun wasn't even close to showing itself, just a rainbow colored sky. So some things are worth being up that early for.

Anyways, they are going to put Cole out, but just a little to remove the tubes so he doesn't feel it or remember. I had heard talk of it being done without anything and this mama was having no part of any more pain than Cole has to have at this point. I'm sure they are really quick and really good at what they do, but if pain can be avoided right now for our little boy I'm choosing that. Who else is going to be his advocate? Now that I think of it, many of you would be:)

I'm not sure how long the process to get Cole out will take, but the removal and stitching up the holes should take about 10-15 minutes. I'm not sure how long we have to hang around after for them to monitor Cole, hopefully we won't be there long and I can come home to wish our Blondie Magoo (Ava Griffin) Happy 5th Birthday and drop Cole off so I can take Ava to school for her birthday.

Worn Out!

Hello all - this is Matt (Cole's daddy) writing.

Not a whole lot to update at the moment. Cole is still at home and is feeling better each day that goes by. However, he still has these 2 nuisances hanging from his chest that seem to be getting in his way no matter how hard we try to keep it from happening. He is curious about them even though they are painful and if he pulls them out, we go back to square one.

The drainage is going in the right direction - lower. We have appointments set for tomorrow and Thursday (at Levine's) and we are hoping that the drainage will get down to where we can take Cole in to have his "boob implants" removed. Keep praying.

As for Laura and I, this is the most taxing thing we have ever had to deal with. Each day seems to be punctuated with a nice, consistent, stout, sharp pain in our temples that on a normal day would seem like a headache....but in this case, that word is not strong enough. I am working every day and trying to function normally, but the fatigue is setting in and I am forgetting things (even MORE than usual) and struggling. However, compared to what mommy is doing every day, I am happy to have an office that I can go to as an "escape" from the unfriendly cage that is our house. Mommy is trying to keep track of Cole while he becomes himself all over again. Imagine taking a baby chimp, letting him drink a Red Bull cocktail with a coffee chaser, and then putting him out into the wild to defend himself against an animal trying to take his last piece of meat. That is Cole at the moment and who cam blame him?

This all seems like a lot of complaining to me and I feel like a pansy for even writing it, but I am doing it just to let everyone know how tough it is. There is no "well at least you are home so maybe you can have some time to relax." We appreciate this sentiment, but there is no relaxing as long as Cole's newest hobby is opening up his bulbs and dumping the contents on mommy's pillow. Sweet dreams mom!

Anyways, that is it for now...thanks for reading. More to come over the next couple of days.

A Thank You Note to Slip In

We are barely doing this, whatever this means. We feel like we are barely hanging on right now. Exhausted right now would feel rested compared to where we are at mentally and physically right now.

We would not be able to do what we are barely doing taking care of Cole if Sharon (Ma) Gilbert were not with us to take on our house, Ava, Lila and now all of us home under one roof. She is doing much more than just taking care of Ava and Lila and the house. She has stepped away from her husband, her grandbabies, daughter and son in law, church, and work and friends who need her at home, not to mention miss her. Home is Boise, ID, so to pop home for a bit and catch her breath or take a break is not possible. She wouldn't do it if she could.

The meals that are keeping us fed may not seem like no big thing, but we know the time taken, the money spent, the time to fit it into your own schedules to make the food and to drive it to our home to drop off is not taken for granted. Going to the grocery store may not seem like a big deal but that seems like the impossible some days.

Everyone who has taken Ava home with them to keep her focused on things a little girl should have her thoughts filled with instead of being scared about her little brother being safe and not hurting, to keep the sunshine in her eyes shining while we are unable to is something we can not make up to any of you who have been able to do this for us!

How do we thank everyone who has done our thinking for us when it has come to every day life that is still going while we focus on Cole and recovery! You have made it possible for us to carry on.


I know I am forgetting to tell all of the things we are thankful for that our friends, family, Matt's co-workers, church, strangers, nurses, doctors, and neighbors have become for us and continue to and will continue to, but I had to remind everyone with everything in us we are so very appreciative! Every single one of you in any way that you have been able to help in any way has saved us to be able to help Cole get through recovery so we can be "Us" as a family again. We will be forever thankful and humbled!

We love all of you for all you have done and are doing!

P.S. We want to thank our friend that bought the singing Toy Story card. Cole holds it up to his ear and rocks back and forth. He would sleep with that thing if he could! This picture is from the day he got it and this is what he has looked like since.

Maybe Home is Not Where The Heart Is

Twenty minutes at home and we were second guessing if maybe the hospital was the lesser of two evils.


Truly, after last night and this morning, bringing Cole home was the right decision and seeing how happy he is.

Well and the fact that Cole was starting to hit the nurses and scream at them like a rabid caged chimp........

Can chimps get rabies? I don't know, anyways,

and he was throwing anything they offered to him that was theirs that might entertain and calm him down, back at them and across the room.

But this is how getting home went yesterday.

After getting Cole home we were so stressed and crazed becuase Cole had already hurt himself, forgetting about the chest tubes and that he had just had his chest broken into and his heart played with by an amazing heart surgeon.
He was crying "Ouchie Mommy" "Help Mommy" from the pain and you could just see and hear the pain. We felt so helpless.
We were ready to drive back to the hospital and re-admit Cole which they were totally fine with because they understood what we were taking on at home to take care of Cole here. We, did not.
Our friends tried to warn us that if we thought it was hard at the hospital, home was a war zone.
We were trying everything we could think of to make him comfortable and safe from the tubes hanging up or being yanked on by a chubby one year old named Lila.
The first 2 minutes Lila scaled the front of the couch reached up and almost removed one of the tubes from Cole's chest for him.
The next 2 minutes Cole scooted down off the couch and the chest tube with the bulb on the end became like a slack line with a boulder attached to the end and it hung just far enough off the ground to jerk it perfectly to cause the most pain it could.
After that incident we were frantically coming up with any idea to pin them here or tape them there to keep Cole from hurting or giving us a reason to rush him back to the hospital not by choice.
I thought we could put zip footie pjs on and let let the snugness of the zip pjs hold the chest tubes and bulbs to his body and then they wouldn't move and he could move around as he pleased.
Not only did that not work but it hurt and pressed them into him and it caused more tears and with those trying to be zipped up in the pjs he looked like a 90 year old woman without a bra on. His fake boobies under his tight pjs were down by his waist.
So I thought well we will leave them unzipped and pin them to the front. The way they were positioned hurt and caused even more tears and more "Help Mom." He also looked like a terrorist with explosives strapped to him. Here is a picture below of my last ditch effort on trying to make Cole comfortable. We went back to basics and put him back in the hospital gown and letting the tubes lay by his sides and one of us sitting next to him like a bodyguard at all times.



By bedtime last night I think Matt had a little more gray hair at his temples and I was so frazzled I was almost in a corner in the fetal position sucking my thumb, ready to check out.
But we took Cole up to his room for the first time in almost two weeks, for bedtime, and his face lit up. He touched stuff like he had just entered a new toy store. It was new and familiar all at the same time. I of course cried seeing him so at peace finally and happy and forgetting about the pain.
Matt played with him and Cole laughed his hard laugh which made us all laugh and cry some more.
We got Cole settled down and did bedtime tradition. A story, praying (which he will shut his eyes tight for and bare his teeth) but don't ask if he wants to pray because he will tell you no. I think because he thinks if you pray you don't get Puff the Magic Dragon sang to you. He thinks if you get prayer you don't get a song, but he gets both always:)
One of Cole's medications has to be taken at midnight so we set the alarm. Cole was sleeping like a baby for the first time in 10 days and it was really tough to wake him up to give him this nasty medication, but we did it quick with an apple juice chaser and had a diaper change as quick as we could. Cole only woke up a couple of times because his tubes had moved the wrong way and pulled on him to wake him up crying.
After the last adjustment we all slept until 7:30 this morning and it was the first sleep Cole and I had had in a week. We were so happy for Cole getting some rest!

This is why home was a good idea.............

Cole was a different boy when we asked if he wanted to go home yesterday. This is our Cole. He was so happy. When he got home he forgot about the pain for the moment.

Home with Worms Attached

Cole calls his chest tubes "wooms that hoot me" (worms that hurt me).

We had the option yesterday after Dr. Watts came to Cole's room to leave today with his chest tubes still in or stay in the hospital and hope by Monday the fluid output was lower and even then it could be even longer before we left.
After going back and forth what was best for Cole we chose to go home today and do the chest tube draining and care at home, and cleaning of incision, and medications.
Cole's little spirit the last two days was becoming more and more broken. All he says is "I go home." He is scared to death of anyone who comes in the room. So we pray that all goes well and that fluid amounts are down by Monday so maybe Tuesday we can take Cole in and they will give him something for pain and a little sedation to take the tubes out and stitch him up.
The right chest tube is still putting out a lot of fluid but the left one is borderline ready to come out. We didn't want to put Cole through this twice.
With the Fontan surgery this kind of drainage can go on for some time. One of our risks being at home is the chest tube gets pulled out and we have to rush him in because fluid will gather around his lungs and he can't breathe.
Some friends of ours were just re-admitted with their little boy for this. He is the same age as Cole. Same procedure. Same story. They went home with chest tubes because the stay was dragging because of the amount of fluid draining and one got pulled out at home. They had to rush him to the hospital because he couldn't breathe and it showed so much fluid still around his lungs.

So, we just got everything in the house and getting started on the care at home part. We wanted to let everyone know Cole is home but literally not without strings attached. He seems more relaxed already.

I don't have a lot of detail yet because I haven't slept, well I can't remember when. I will be getting a light hearted blog entry after getting caught up. Good Cole hospital humor:)

Welcome Home Cole Bear! We love you so much. I think this was the best birthday gift Ava could ask for! Cole coming home safe!

Recent Pics

This is Cole's girlfriend, crush, love of his life. "Need you Lisa" is what he said and I scooped him and balanced him to place him gently on her lap and he laid his head over and went to sleep. Then he proceeded to eat her lunch and the whole bag of chips she brought with her lunch.

MOVIN ON UP TO THE 8TH FLOOR!

This was Cole yesterday 9/25/10 relaxing with Daddy



Movin on up to the east siiide (Matt and I were singing that to Cole as he looked at us like we were idiots)









Thank you to everyone that has given Cole something to make his recovery rooms more like home! I showed Cole each card and each book and each toy. He was trying to be a good sport and everything I showed him he said "wow" in a monotone voice:)

I went back up to Cole around dinner time and found a note left by his nurse


The nurses constantly have to come in to check vitals, give more medicine in his IV's (he feels whatever goes in and cries), drain chest tubes and so on, etc. After a while of this, he was crying "I go home, I go home" for the next hour. Trying to tell a 2 year old that the more he lets them do their job the quicker he gets to come home is a tough thing to do.

Matt came up late last night to spend the night since I was going to be there for the week.

Matt said this morning they went for a ride in Red Rider wagon and Cole clapped his hands and said "yea." It made my day because that is our Cole Bear, and to see his old self come out for a brief moment made things a little bit brighter! I can't wait to get back to him, but spending some good time with the girls and Sharon is nice too.

Like a Cat Whose Hair Has Been Rubbed In The Wrong Direction

This title describes how Cole was from about 11:30 on today. He was irritated with it all, with everyone and anything! He had his hands behind his head or we caught him in a moment with his hands on his face staring at Thomas and G (Tom and Jerry) and had one leg crossed over the other at the ankle just moving his foot with the O2 monitor strapped on his toe in a fast agitated circle. Round and Round his foot has gone until I left this evening to get some sleep and see the girls. Matt came this evening to spend some time with Cole. I went to sneak out because he seemed to be about to doze off in daddy's arms and I heard behind me in a small sleepy voice "don't go mom." I told him I would be back just not when. For the sanity for us all I came home to get sleep and go back tomorrow in the morning.
Thank you for the continued prayers! There is much to be thankful for and give God the praise.

Goodnight to everyone and sweet dreams. Tomorrow is a new day. I am hoping for donuts from MJ Donuts in Pineville! I am going to go read to Ava now and pray and maybe sing her song "Over The Rainbow," and tell her I love her:) The Tank Lila Griffin will get her love too:)

There is JOY in the morning! Good News of More Removal

I mentioned before that I stayed the night in Cole's room. I went into it knowing it would be hard, and I thought that would prepare me! Not so much. At 2:00 am, I was so tired I was sick to my stomach but I didn't want to go home because I knew I would just lay there wondering how Cole was.

Right now Cole is uncomfortable and that's just the way it is after something like this. I want to take away all his pain and discomfort, but at the same time that's not realistic after something like this. If it was, there would be no recovery time and it would be nice to have surgery and go home immediately after with no stay at the hospital and no pain.

The thing hurting Cole the most right now is having to cough from all the mucus from anesthesia. You can see him doing everything he can to not cough, and when he does, he cries. Every time he coughed during the night he cried "Need You Mom," and I would try to untangle from my blanket and hurry over and put my hand on his incision area. He needs pressure applied there if he sneezes or coughs to protect the breastbone so that it can grow back together correctly and the incision can heal. The other things causing discomfort are the chest tubes that drain excess fluid out away from his heart - where they are attached to his body they pull with any shifting.

He was upset all night. Cole's voice is so pitiful right now that he makes it even harder to not do what he wants done. He kept saying "Done, Mom," "Need You Mom," "Hold Me Mom," "Sleep In Your Bed Mom."

My bed last night was a bench in his room that I can tell you right now made me want to lose about 30 pounds. I think my hips are just a hair wider than that bench! Dr. Watts came in this morning, and I'm sure he sees lots of parents who have spent the night on that bench, but it is no pretty sight for him. He saw a mom who had mascara from the day before down her cheeks, hair halfway held in hair clips, and puffy eyes from crying and no sleep. My breath was so bad, and I am not kidding, it smelled like a dead animal. In addition, I did not make much sense when answering questions. I do remember that he asked "why is our little guy so agitated?" I kind of said as a question/statement "I think he's just acting like someone who just had surgery, I think he's unhappy but not unexpected unhappiness."

Dr. Watts said Cole will have one of the chest tubes removed today and his central line will be removed! Little by little Cole is becoming the little boy we all know and love again. His spirit is in there but it probably won't come out until later in the week. But, as all of these new attachments are slowly dropping off one by one, he will be more comfortable.

I came down to the 5th floor to update the blog because they were going to start the process to remove two more things and I don't like being there when that happens. One time I thought I could handle it, but when I tried I ended up leaving as quickly as possible because it's painful and Cole screams. They do it as quickly as they can and afterwards he is glad they did it because it makes him just a bit more comfortable.

Here is Cole after all the ouchies of removing some of the tubes and lines, sleeping peacefully.





On a sidenote, last night as I went to the car to get my blanket and pillow, a mommy was carrying her little boy (maybe 4-5 years old), hurrying him to the lobby of Levine's. He was crying like he was in pain and you could tell he had had treatment for cancer. I'm an emotional wreck right now anyway, and I never know when I will cry or if it will be manageable tears I can blink back and keep under control or an ugly cry where I cover my face because nobody should have to look at that kind of face:) BUT, this time it hit me in the two seconds it took for this mommy to hurry past with her little boy. It made me break down and cry in the parking deck because I can't imagine what that mommy is feeling and has been dealing with. Trying to be strong for her son (and possible other siblings) and maybe the daddy...or maybe he couldn't handle the stress and left her to deal with it by herself. Or maybe daddy had to stay with siblings because they didn't have someone to call so he could be there with his little boy. Please pray for this mommy and little boy that I passed last night.

There are millions of stories every day and there are hundreds right down here at the hospital. We are going through something I can't even put in words, but there are so many people going through much, much worse.

We are extremely humbled by everyone taking on our tough time right now as if it was their own and their own stuff taking a back seat. We know that what we are going through is not nearly as tremendous as what some of you are going through personally or with a family member and we do not take your support for granted!

I'm going to get recent pictures up as soon as my technologically advanced husband gets his hands on the camera and usb cord. These hospital computers are a bit different but thankfully we can even do the blog from here at all to update everyone!

Mommy's Arms

Last night Sharon and I came back to the hospital a little after 6:30. It's to be expected after a surgery that nobody is comfortable. It's so hard to try to not cry with your 2 year old as he cries and looks to you to make it go away and make it better. He just kept saying "need you mom."

At that point, there was no question that I was spending the night! Nobody needs to have that said twice by their little one.

After some switching and transfering lines and chest tubes (drainage tubes), Cole wanted me to hold him so we settled awkwardly in the rocking chair. Cole was finally comfortable because we were close. He was over the hand holding and he didn't care if it hurt to be transfered so I could hold him. He relaxed almost immediatley and finally closed his eyes to sleep.

He is really bothered by his central line since it is stitched and taped to his neck. If he pulls on it, he feels it pretty bad, but it automatically pulls with some of the weight from the other mechanics and things attached to it.

After a while of arms falling asleep, every muscle cramping, and some of them starting to have ticks from fatigue, I was still determined to hold him all night if that kept him relaxed and from crying. It didn't last too much longer because his chest tubes kept shifting and pulling and those really hurt with any kind of movement or touch. He was hurting and I couldn't take that I was doing it and I transfered him back to the bed.

I won't talk about all through the night because it will be like that every night until he goes home and I just need to focus on the fact that we are that much closer to Cole getting to go home.

Come back to some of these posts I will get pictures up asap!

Something Else Encouraging

This was this morning when I walked in the room and he was sitting up but not focused and didn't know it was me.........



Matt and I as well as so many of you have been praying for months that every person who was suppose to be with Cole caring for him down to the ladies who come in to make sure Cole's room is sanitary and clean that they would be put there by God, or we would know that every person in Cole's path was suppose to be there and it was no coincidence.
I want everyone to know that those 8-10 people last night were the best of the best that "happened" to be there at that time. The head nurse was not even suppose to be there that day and especially in CVICU where we were. One of the cardiologists that was not there but was filled in on Cole's situation said. "Oh you had the dream team."

Dr. Watts came in close to 1:00 pm today and told us if we were going to step away from Cole and get out of the hospital, now would be the time. They have one on one nurses in CVICU but progressive is a different story and we will need to be there full time.

So we came home to show Ava and Lila that Cole is not the only one in our world right now. He's a big part but they only understand that we are their mommy and daddy no matter what is going on in life. We are grabbing some "Woody Crackers" a request of Cole's even though he can't eat yet because they don't want the stress of a possible hurl right now.
Woody Crackers are Cheez-its that have Toy Story characters on them. Totally and super nutritious they are! I'm also grabbing bribery items for when he starts being his old self again and wants to do his own 2 year old thing even if it hurts.

From a mommy's heart and I know Matt feels this way too but the one thing I can't wait to see is Cole's 152 tooth smile. He has teeth like a shark, I swear there are like 2 rows of teeth and a smile that takes up half his face!

I couldn't figure out what I kept feeling and it's almost like survivor's guilt. Even when we were leaving our nurse and another nurse were having a new patient coming over to CVICU a 5 month old baby coming out of surgery had coded in surgery and coded again on the way over to where we were. I shouldn't feel guilty that Cole made it out of what he did, but it's hard not to feel heavy hearted.


Also I'm going to put some recent pictures from earlier around noon before we left him resting peacefully.

There is Praying and Then There Is Praying

I want to start with, well not a fresh set of tears, but here come the tears, but happy tears. We are overwhelmed by the love and prayers poured out last night for our Cole Bear.

Before I tell you what happened when the call went out to pray and after that call.
I want everyone to have some relief and joy this morning. I am going to tell you some things that will make you smile and maybe make you laugh and probably do the laugh/cry because you are relieved.

Last night Cole was knocked out with his sedation and pain killers and he tried to tear his breathing tube out so they restrained him. Cole was out of it and the nurses were saying "he's a wild man, we can tell he is going to be wild when he is awake." Matt and I smiled, they have no idea what they are in for when he is up and about.

Late last night after they got Cole stabalized they were able to extubate Cole. They thought in his case it might be better if he tried breathing on his own. After they took the breathing tube out he said in a croaky whisper "want juice." For us as Cole's mommy and daddy to hear that, we knew our little man must be doing a lot better! Around 11 he asked for Thomas and G (Tom and Jerry) and then we really knew he must be getting back to himself. Auntie K went to Walmart late last night (thankfully they are 24 hours) and I think bought every Tom and Jerry DVD they had!

Matt and I stayed down the hall from Cole. We were not planning on staying because we all didn't expect Cole to do what he did. Matt went home to grab a few things. They handed us a key. It was not like when Chris Harrison from Bachelor/Bachelorette hands them a letter and key to the fantasy suite, but we were grateful for anything to stay close to Cole!

One of my sisters, my little sis Izz described, how a lot of us felt and feel today. "I cried so hard and so much and prayed so hard, it felt like a cry hangover this morning."

Girls from Cafe Breakaway I don't know if I will be able to look at you for a long time without crying everytime I see you.

Everyone from people who don't even know us or Cole and to people that have known us for a few years to people who have known us our whole lives stepped up last night for Cole and for us. We felt waves of these prayers last night.

Pretty soon it's going to sound like I'm up here for an Emmy Award with the thank you's. First I'd like to thank God and then.....................not really but we truly do want to Thank God and every single one of you for praying and praying hard. I don't even know if it's so much how hard we prayed because I couldn't do anything but watch and didn't know what to pray. I just kept saying "please help" and get to the point where I knew something was really wrong and at one very low point acceptance just came in and I said to God "so this is what it feels like to see you take our baby back.".....................Indian Giver. No, I was respectful, I didn't say that. It's a weird thing to believe what you believe as a believer and on the other side how you feel as a mommy. As a mommy and daddy we were and aren't ready to let go and never is any mommy and daddy ready to let go.

Anyways this morning I went up to 6th floor in Levines CVICU to Room 5 and it was empty. I turned around and just said Cole Griffin and she smiled and said "oh he's down the hall." Another nurse showed me around the corner and down the hall where room 9 was. I didn't know what to prepare myself for and when I walked around the corner my eyes popped and my mouth dropped. I couldn't believe the same Cole from last night was in front of me this morning. He was sitting up and had had some juice. His nurse said "we are not friends (her and Cole) right now because I have been messing with him." She said he had removed his IV on his own so she asked Dr. Watts what she could start removing because Cole Trouble Griffin was going to remove it himself.
Cole is very drugged so he didn't know who I was at the moment. The nurse had blonde hair and had said earlier she was standing in the corner while another nurse took care of some stuff on Cole and he looked over at her and said "mommy" and started crying. Yes, more tears right now from me (mom) just typing that.
He just wanted juice and more juice. Matt is upstairs with him right now as I try to gather thoughts and try to put myself in all of your shoes being on the outside wanting to know and seeing it through our eyes.



Now I will tell you what happened yesterday around 4. We had not been in there long after they had moved him out of surery into CVICU when Cole's heart rate started rising. He had a temperature and that makes your heart beat faster too so they had ice around his head and neck and in his "hospital pants" buzz and woody pull up. We got his temperature down and we removed the ice, but his heart rate was getting higher and higher, he was up to 200 BPM for a long time. Blood pressure kept dropping. All the sudden there were 8 to 10 cardio nurses, doctors. One of the cardiologists was Cole's cardiologist. Matt and I knew something was really wrong but I kept saying if he's that close to dying they wouldn't let us stay. They did an eco and it wasn't showing what they thought might be the problem. They thought there might be too much fluid around the heart or a block in the fenustration (sp).
This whole time you have never seen so many syringes of medicine being pumped in and everyone is moving and doing and discarded things are falling where they drop and it's very controlled chaos. Matt and I are sitting there like statues afraid to move, or ask anything. I am not a medical girl but I knew enough to know that it didn't look good for Cole and I entertained the thought that he might not make it, but I just kept thinking they wouldn't let us be in here if it's so close. I would have moments where I couldn't cry and wanted to. Then I would go to cry and would suck it up because I was afraid I couldn't stop. We did this for 3 or so hours watching Cole's monitors go the wrong way until his blood pressure was 40/over something in the teens. Very slowly after 7pm Cole's monitors, little by little, started showing his heart rate come down, his blood pressure start to go up one number at a time.
Around 7ish our amazing head nurse thanks everyone for coming to her rescue and Cole's rescue. Matt and I still had no idea how close we all came to losing Cole. One of the nurses came up to Matt and said I can't believe you two sat there calm like you did and watched us do this and watched your son do that. What were we going to do? We would have only messed them up from saving Cole by getting in the way.
Later our nurse told Matt that Cole "pre-coded" and she was getting ready for him to code.
So for all of us, and I mean, all of us wether you were here or in your home or across the United States, we didn't know how serious last night was, but God decided in favor of so many prayers. I don't know why or why us and why Cole, but we can't even say we are thankful. We are beyond thankful. We have been with families over the years up here that don't get such good news and don't get to take their little one home and they have prayed and people across the nation have prayed and we have prayed and they don't get to keep their baby.

We will take today and this minute and make the most of it because God has each breath in his plan. It doesn't mean that a part of us still isn't hesitating letting our guard down because of what Cole did and they said could do again, but we don't want to waste time with him or eachother focused on that part.

We love you all and we couldn't have done last night without out all of you pouring your hearts and prayers out. I need to get back and see our Cole Bear. Matt probably thinks I skipped the country by now:)

CVICU - Please Pray for Cole

WOW (*wiping a tear*) That was tough to see and hear.

Laura and I just visited Cole for the first time, and he looked great. After all, he looks like his daddy, right? However, he is still fighting some pretty serious obstacles.

First of all, his blood pressure is very low, so they are medicating him to try to bring his BP up to normal levels. Low blood pressure can cause some serious issues when recovering from surgery.

The second issue is that he is running a temperature of about 101. They have ice packed behind his head and in his diaper (sorry buddy!) to bring his temperature down. I guess he won't need that wheelbarrow anymore for those watermelons he is used to carrying around.

Another issue is that there is more discharge (ie...blood) draining out of his chest than they like. They have not given him any blood yet, but have some ready if he needs it.

Last but not least, they have given Cole some "paralytics" to keep him sedated and still because even though he is on a ventilator (breathing machine), he is breathing on his own over the top of it. In a way, that is great because it means that he is fighting, but until everything is where it needs to be, he needs to remain still and let the machine breathe for him.

Some of the terms we have heard are:

"he's doing O-KAY, but not great"

"we have had to intervene a LOT"

"he might have been coming down with a cold before his surgery because we have had to drain a lot of mucus out of his lungs"

"we need to get him where his heart can function on its own and right now WE ARE NOT CLOSE to that"

There are others, but suffice to say that he/we still need your prayers! Just because he made it through the surgery does not mean that the recovery is without risks. He is only halfway through the battle and it is tough to celebrate winning the first half when you don't know what the second half involves.



*WARNING: the picture below is disturbing and shows what a child recovering from heart surgery looks like. If you are easily offended or have a weak stomach, please do not scroll down. Laura and I want to document the good and the bad and have done that all along, so if you are interested in the "real world" of all of this, this is what it looks like.

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