Thursday, September 22, 2011

One Year Ago Tonight

One year ago tonight, we almost lost Cole after he came out of heart surgery. Tonight we looked at him longer than usual, we held him a little tighter. Tonight we looked at our girls a little longer and held them a little tighter. Tonight we got a little choked up as a we prayed and were humbled again for being given a second chance with Cole.
As I sat and thought of all Cole's favorite things and favorite things to do and how we almost weren't sitting here a year later doing them with him, one of those things was singing "Puff The Magic Dragon," Cole's favorite bedtime song.
But, we are sitting here a year later and we have been given 365 days more than we thought we would get. In reality we have almost 4 years more than we thought we would get because nobody knew if Cole would make it past delivery on January 7th, 2008. Every day is a gift with all of them, make it remind you that a brand new day is another gift.
I have to look there or I will start to look forward to the days of what ifs. Those moments definitely come, but over all I want to make our days filled with the present.

Our hearts are heavy tonight thinking of moms and dads tonight that are about to go through surgery with their little one, or are in the middle of it, or have gone through it and still trying to get above water with all they have just gone through and seen their little boy or girl go through. We pray strength for you as you go into the trenches together and the personal wars you will fight in this and through this and after this. We pray for peace in your spirit that you can only know came from God because only He can bring peace like that in the middle of something so traumatic.
We pray for a quick healthy recovery for your little one and for a strong healthy heart and a strong healthy body.

Thank you to everyone who has been praying for Cole and our family and continue to.

I'll have to get a recent picture of "Skinny Deetz" up. His latest thing is wanting to sit in the back with big sis Ava in a booster seat, but he has to gain a few lbs. to make weight for the booster seat, so we are trying to use that as leverage to get him to eat enough to put some meat on him.

Tuesday, December 7, 2010

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.

Monday, October 18, 2010

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!

Tuesday, October 12, 2010

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!

Friday, October 8, 2010

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.

Wednesday, October 6, 2010

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.