Tuesday, November 25, 2008

The Happiest Place on EARTH!



Hello all-

We realize that this website is all about Cole and that most of you would like updates on him. The truth is that he is doing absolutely fantastic and there is really nothing new to report. He is eating like a starved lion and growing like a bodybuilder on steroids. He is doing well. That being said, many folks are asking about our recent trip to Disney World so this post will be all about that. Since Ava is not a big enough diva to have her own blog, we got "Tubbs" to agree to share some bandwidth with her so that we could update everyone on the Disney trip.

After reading all of this, if you still somehow have questions about Disney, then you need to seek help, immediately. If you are not bored to tears with details after reading this post, then I have not done my job. If you are bored to tears, then you have my blessing to stop reading at any time.


THE TRIP
We awoke at exactly the "crack of arse" on Saturday, November 15. After we staggered around and finished packing, we woke up the babes. Ava was so excited that she had no problems getting up. Cole, on the other hand, looked at us as if to say "ummm, excuse me, but exactly what in the blue hell do you think you are doing waking me up this early?" He did not cry, but he was letting us know that he did not appreciate us interrupting his sleep.

The check in went smoothly, as did the security check. We boarded the "big ole airplane" as Ava likes to say and they let us go into the cockpit to see all of the gauges. Of course, Ava (the future engineer) loved that. The flights went fine and Ava behaved well.





THE HOTEL
We figured that if we are only going to do Disney once every 10 years or so, that we should do it right! I had not been there since I was 11 years old and we probably will not go back for another 5-10 years, so we stuck to the "only living once" ideal and stayed at the Grand Floridian Resort. I knew that we were in trouble when the Delta check in lady in Charlotte saw the tags on our bags and said "wow, the GRAND Floridian, Niiiiiccccce." Basically, I could have handed them my ATM card with the PIN number and then gone home and been less broke.

The hotel was beautiful! The rooms were nice and ours had a view of Cinderella's Castle from our balcony. This came in very handy for watching firework shows, etc. from our room. Also, the monorail had a stop at our hotel and the Magic Kingdom was only 1 stop away.






THE PARK
As we walked up to purchase the tickets, I remembered what my good friend Tony had told me: "the tickets are HIIIIIIGGGGGHHHH!" I figured it might be $300 or so for all 3 of us for 3 days. That is high to me. Then, once I explained that it would be 2 adults and 1 3-year-old and that we needed tickets to the Magic Kingdom only, the gentleman said that we would get a discount. Then he said to me "ok, 2 adults and a 3-year-old for 3 days for Magic Kingdom only with your discount will be $652." After I "shat" my pants, I changed my underwear and puked for a while. Then, as I handed him my credit card I knew later I would be getting one of those "Sir, this is Bank of America calling....did you, someone you know, or some moron just charge $700 for tickets to Disney World?" calls. Anyways, thanks Tony for the heads up....sorry I did not listen.

The park is beyond description. It is amazing. Basically every dream of a child comes true just by walking around. To try to describe it in words is like trying to convince someone scientifically that there is a GOD. Either they believe it or they do not. This is a place that you have to visit with your children to see the look on their faces to know how amazing it is.

Another way to look at it could be a well designed, well thought out evil master plan with the purpose of removing American currency from your pocket and depositing it into the Disney International bank accounts. Some things were very expensive and then some things were good deals. 2 hot dogs, 2 drinks, and 2 orders of fries was $22 at "Casey's" while a croissant, a banana nut loaf, an apple fritter, 2 choc chip cookies, a blueberry muffin, and 2 bottles of water was only $16. Weird, huh? The entire park was like that.

THE CASTLE - "Daddy, go talk to them"
Ava immediately pointed at the huge Castle, and said "who lives day-r?" We told her that Cinderella lived there and that there was about to be a big fireworks show any minute. Then, Ava said "I want to go inside dat Castle." I explained that they would not let us inside the castle (little did I know that we would go inside it several times later on) and she said "Daddy, go talk to them." Laura and I fell out laughing. As if I could just waltz up to the front door, knock, and then convince whoever came to the door to let us in while leaving the other 65,000 kids out. Ava has some extreme confidence in her daddy I guess, and I am a good salesman, but not THAT good.



THE MAKEOVER
On Sunday, Laura had planned a princess experience for Ava at the "Bibbity, Bobbity, Boutique." Come to find out, this is a boutique located in the back of the big Castle. Once Ava realized that she would indeed get to enter the Castle, she looked up at me and said "DADDY TALKED TO THEM!!!!!" It was priceless...she thought she was getting to go inside the castle because I had negotiated with them. I wish that was the case, but in reality it took two "Benjamins" to negotiate our way in, if you know what I mean.

What they do at this boutique is amazing. They take a little girl and let them pick out which princess dress they want to wear, which crown they like, which wand, etc....and then they fix their hair, apply a small amount of makeup, paint their nails, etc. They turn little girls into real life princesses essentially. I thought Ava would LOVE this and she did at first. She picked out her items and then Laura accompanied her into the dressing room. What happened next was the most puzzling thing on earth. Ava had a meltdown....no, a Meltdown....nah, a MELTDOWN. There were approximately 20 little girls in this boutique and one was crying and screaming, and I bet you can guess which one that was. We were so *proud* Anyways, after we calmed her down she actually had a decent time. This place would be amazing on any other day or maybe if she were a bit older, but one this day it was not a home run to say the least. We are still not sure why.




THE CHARACTERS/FAIRIES/PRINCESSES

Ava got to meet every character on a one-on-one basis over our 3 days. She met Mickey Mouse, Minnie Mouse, Donald Duck, Daisy Duck, Goofy, Pluto, Snow White, Sleeping Beauty, Ariel, Cinderella, Jasmine, Belle, and all 3 fairies including "Tinkerbell."

I have included some of the best pics. Ava did well for the most part but she was shy and nervous around a few of them. Mickey was her favorite character, Cinderella her favorite princess, and Tinkerbell her favorite fairy.

I could share stories about every one of them, but Mickey Mouse was the best one so in the interest of time, internet space, my tired fingers, your schedule, and for all that is HOLY, I will only explain the MM meeting. We went to meet MM on the night of the "Very Merry Christmas Party" at his house. We waited in line for about 30 minutes (which is very short in comparison) and then when it was Ava's turn she RAN up to him and gave him the biggest bear hug! This hug is usually only reserved for mommy and daddy but apparently MM is now in our league. He then bowed to her and blew a kiss to her and held her hand. Once we told him that he was her favorite character, he danced with Ava and spun her around. She was in heaven. The smile we got to see on her face was worth every penny that we had paid. The finale was MM kneeling down and letting Ava kiss his nose. This was the highlight of the trip to that point, although all of the characters were cool.































THE RIDES

Ava's 3 favorite rides were "the Teacups, the Horse-ies, and the Dumbo." The Teacups is a ride where you sit inside of a big circular teacup and then twist the middle of the cup while spinning around and rotating at the same time. Ava loved this. The "Horse-ies" was a basic carousel and the Dumbo was a flying Dumbo ride. She loved all 3 of these and wanted to ride them over and over again.



ONE MORE RIDE - "THOSE HANDS"
The last night, After Laura and I carried an exhausted and freezing Ava to the front gate on our way out, she said to us "I want to ride the teacups one more time." Laura and I looked at each other in disbelief. How was Ava still awake? How could we still walk? My back was sore and Laura was sick. We were beat. We were so tired that we could have fallen asleep standing up. However, we decided that this was Ava's trip and it was not about us or how we feel, it was about her. We decided to take her back for one more ride and I thank the Lord that we did. Perhaps HE put that thought in her head to ride one last ride.

We rode the teacups ride and Ava had a blast, but got even colder. She was ready to go home. However, there was a ride called Mickey's Philharmagic that is indoors and was right beside the teacup ride. We must have walked past it about 50 times and had not ridden it, but since we all wanted to warm up and there was not a line, we decided to ride it. We walked into this open room and there were 4 sets of double doors in front of us. They lined us up in this room and we stood there and waited for 8 minutes (which was boring) and I thought to myself..."no wonder there was no line for this one, it stinks." Boy, I could not have been more wrong.

When the double doors opened, I saw a huge crowd of people leaving a theater and we took our 3-D glasses and entered the theater. We sat down and were treated to a 3-D show that was so real and captivating. It had the Mickey characters in it, as well as the princesses and Tinkerbell. It was so real that when they threw a bucket of water at the crowd (in 3-D no less), they actually sprayed us with water in the face. It was classic. Also, when wind would blow, your hair would be pushed back from the force of the wind. This was so real. Little did I know that the greatest part of our trip was about to occur.

As Ariel, MM, and Tinkerbell floated right in front of our faces, I saw Ava put her sweet little chubby hands up in the air to try to touch them. She was sitting on my lap and I looked around to her face and she was dazzled. She had this enthralled look on her face and she was reaching so far to try to touch the Disney characters. If you could see the sweet innocence that she had as she was dreaming with her eyes open, it would bring a tear to your eye. It brought a bucket of tears to my eyes....I sat there and cried during the entire ride/show and again, this moment was priceless. I will never forget how she looked at that exact moment. Never. I could not even talk about it an hour later without my voice cracking. That is my little girl and to see her that happy, I would give anything I have or everything I am to give her that again. You only live once. All the money this trip required paled in comparison to the look on her face and "those precious little hands."

THANK YOU
That about wraps it up. Our trip home went well and we were glad to see Tubby's face again. Cole stayed with my sister and her family, and we want to say THANK YOU to them for taking such good care of him while we were gone. If Ava only knew that it was you guys that made this trip possible, she would give you one of those big bear hugs that only mommy, daddy, and Mickey Mouse get. Thank you so much! We Love You.

Also, I want to say Thank You to our LORD for blessing us to be able to take Ava on a trip like this. It was expensive and really if we were being perfectly reasonable and financially responsible, we should not have gone. Again, you only live once and we took a leap of faith and it was amazing. Laura and I asked each other on the way home "how many 3 year olds can say that they went to Disney World, met all of the characters, went inside the castle 3 times, ate lunch with ALL of the princesses, was made into a princess herself, and stayed at the nicest hotel at the resort?" Not many, but our little Ava did. Thank You Lord!

Thanks for reading. God Bless. We Love Ya'll!








Saturday, November 1, 2008

Crabby Cole and Fairy Ballerina Ava

Last night we packed up the wagons and started our walk up to "the green" at the community center with our neighbors and friends to see the pet parade and children's parade. It's so great to see all the little ones dressed up and the dogs who are another form of children in costume.


Here are our two doing their part to bring it with the costumes. I don't know how much a crab can bring it, but Cole was a good sport about it all.














Tuesday, October 21, 2008

Birthday for Sister, Colds, ,Apple Festival,Chili Cookouts and running like crazy




Hi everyone,

I know it's been a while. All of a sudden Ava's birthday party was here and we have been running ever since. Ava and Cole's Aunt Jeannie and Uncle Will flew in from the West Coast to be here to celebrate.

We have weathered two colds with Cole now and he has done really well both times. We are waiting for the Dr. to call us to have us come in for RSV shots again this year just to be on the safe side. They said Cole is probably strong enough to handle it this time around but they felt more comfortable doing it again this RSV season and we were for it too.
We have all had our flu shots and Cole is waiting on that too. Since he had an egg white allergy show up at the allergy testing they want to watch him for a little bit after. They feel it more important for him to get his flu shot than get the flu and we agree with that too. We'll give him some Benadryl before to help with anything that might try to give us problems.

This past weekend we went to the Apple Festival out in York/Clover, SC. It was a fun time as a family. We came home and that evening went back out to a chili cookout and music in the neighborhood. It was very cold, but still a good time.




A note for those of you who know the nightmare of Eczema and more specifically Cole's battle with it and people who have been praying for Cole's eczema, we have had some kind of breakthrough. God has answered some prayers because some things we changed for Cole again have seemed to help with his eczema...........dramatically. It's not gone, but it's night and day difference for us and Cole! We actually made it a whole week without having to use any steroids which has been impossible before this to go longer than 3 days without a head to toe breakout. When the doctors gave up on us and our dermatologist was careless with her information or non-information we tried somebody who does natural medicine. When you are left with nowhere else to turn and you watch your child suffering 24 hours a day you will do anything and try anything to help them.
Some of the items didn't hurt but just weren't strong enough to battle the eczema. Some of the items we are still using seem to be making a huge difference! We are still putting a drop of flaxseed oil in one of his bottles a day, and we changed our deteregent for a 4th time. I can't tell you if it's all of the above or what, but we are going with it because it has given all of sleep again. We are going on 2 1/2 weeks now and have only had to do spot treatments here and there.
We still have an appt. at Duke on November 4th since it was so hard to get in. It can't hurt to go.

We hope you enjoy the recent pictures and God Bless,

Laura

Thursday, September 25, 2008

Note to Self

The oatmeal bath turned into a bad experiment. Cole looked like one big red blister tonight and what was almost cleared up returned even angrier. Oh well, now we know, oatmeal baths are off limits for Cole's case. We even bought distilled water to make the oatmeal paste with to be safe.

2 1/2 Months Later


We went back to see Dr. Bensky this week for a check up on him. This was our first time back since his post-op visit. We were even going back with Cole's first real cold. We were curious what his oxygen levels would be with a bad cold, but at the same time something we were glad we didn't know everyday that he has had this cold.

Anyways, Cole was weighed and measured. He came in at 20 lbs. and 28 1/2 inches. We don't call him Tubbs McGee for nothing:)

His oxygen came in in the mid 80's which is great for Cole.

He was able to come of his lasix also, so one less medication for him to have to take.

After Sean our male nurse took all the measurements and readings Dr. Bensky came in and he just started laughing when he saw Cole. He just laughs at how big Cole is in general but especially for a heart baby. Dr. Bensky almost seems like he wants to line up some pediatricians everytime he sees Cole to challenge them to see if they could tell him that Cole is a heart baby without seeing his chest where the incision is.

Cole and Dr. Bensky have a special bond that has grown and it's a good feeling as parents to witness this, since Dr. Bensky is such a big part and has been such a big part of our lives since I was 5 months pregnant.

Dr. Bensky listened to Cole and said "he sounds great, everything sounds like it should."

We don't have to go back until January so they can check Cole out. Next time will probably be an echo just to see how flow and function is doing.

Then Dr. Bensky said we won't see him about once every six months until the next surgery, as long as no surprises come up. This my friends and family is great news and a relief to not be going to so many Dr. appts.


This is just Cole with his new Veggietales toothbrush that sings veggietales songs while he chews on it. Cole showed me just how much of a temper he has when I tried to make him part with it for just a second.




On a different note, I decided to give an old fashioned eczema treatment a try........................oatmeal bath. Here is how it went. Very messy. Cole thought it was breakfast and started pulling it off and eating it and gagging on it while I tried to apply more and keep his hands away.
Maybe I was suppose to fill the tub with water and oatmeal and let him lay in it. I made a ooey gooey icky paste. I think it helped a little with the dryness, but the angry red patches were still there. Maybe it takes more back to back baths. Regardless, Cole had fun and it may not be the cure, but it seemed a little helpful at keeping him a little more comfortable and less itchy.











Wednesday, September 10, 2008

Family Catch Up

This past Monday, September 8th, Cole had some of the family come meet him for the first time.

For those of you checking in and wondering who belongs to who and how are we all related. George and Barbara are Matt's Aunt and Uncle from his mom's side and Lynn is another Aunt, also from Matt's side.

We had some good laughs with PawPaw's jokes and Gigi just being Gigi and we love that she laughs right along with us!

We won't bore you with more riveting conversation about Cole suffering from severe eczema and finding an alternative to the steroids, which made up a good bit of conversation for the day.

We all were wishing we could have just an ounce of Barbara's energy playing with Ava. Ava was so excited to have found this new family member that she stripped down to her bare skin to show Barbara just how deep her love ran.

At one point while I was able to catch up with Lynn, who you would just have to meet and talk to, to know what a sweet heart she has and a very special family member to us she is. Ava loved Lynn's vest with the birdhouse and bird on it. She immediately assumed it was something made just for her to play with and was in Lynn's lap asking questions and pointing to the interactive vest.

George and Cole had a very sweet bonding time. Cole snuggled and George rubbed that sweet little bald head and kissed it. Cole snuggled right in and went to sleep. It was a special moment to see.

Poor PawPaw was so desperate for some tv time he asked if I could hit play on the Praise Baby DVD that had been in from earlier that day and had sat on the same screen waiting for someone to hit play. He was very patient to have sat through all of our doctor and health talk and just family catching up talk, so I was more than happy to push play for him. I'm sure he added that to his Greatest of All Times Movie List along with his favorite, "Roadhouse," with Patrick Swayze. He likes a little Steven Seeeeagal movie too:)


We sure loved seeing all of you and had a good time! Thank you for making the trip down! We hope to come that way and maybe we can get everyone together up there. Ava and Cole are in for a treat to find out they have more family and more cousins!

Take care everyone!
Laura





Monday, August 25, 2008

Summer Fun In The Wagon

Ava and I decided to put Cole's ability to sit up to the test. I pulled them around the porch very slowly.

Cole was more interested in laughing at his sister and Ava was more interested in trying to touch the tires as they went around.












Cole and I have had our days full with taking Ava where she needs to go and be picked up from. She is quite the busy almost 3 year old.

Hope all is well with everyone that checks in here!

Laura

Wednesday, August 6, 2008

Summer Fun

This past Sunday, the 3rd, Ava and I went to the pool. Daddy and Eczema Boy Cole stayed home since sweating brings on an outbreak.







That evening we went out to Gigi and PawPaw's house and PawPaw took us out on the boat. We ended up having to unzip Cole's life-vest because his cheeks could not be contained. He was so relaxed on the ride that he almost fell asleep with the breeze and being on the water. Matt chased Ava from the front to the back most of the time making sure she didn't make any last minute moves into the water. She was kind enough to give us a heads up early on by mentioning that she wanted to float in the water.

We also admired all the beautiful lake houses.................................Do you even call homes like that houses. They are much more than just a house. The landscaping alone is beautiful to look at. One of the homes had a pool house that we could have lived comfortably in and to wake up to that view every morning probably would be beautiful from their tool shed. Just kidding people with that kind of money don't have sheds. Anyways it was a beautiful summer night on the water with the babies and seeing their faces.






Saturday, July 26, 2008

Even Better

Yesterday, Friday the 25th, we showed up for our post operative appt. with Dr. Besky and Dr. Watts. We walked up to check in and we knew as soon as they started looking up our name that the Progressive nurses once again were living up to their reputation.
We were informed that we were suppose to be there the day before and that, imagine this, Dr. Watts would not be seeing us because he was already scrubbing in for surgery. Of course.

Well, since we informed the discharge nurse in Progressive when she gave us the date of Friday the 25th that that couldn't be correct because Dr. Watts ONLY has office days on Thursdays and that is the ONLY day he sees patients for office visits. She argued with us and said not in this case. We accepted what she said and went on. Only to bring us to Friday, June 25th and standing there looking like a bunch of a**holes and not being seen by our surgeon.

While we sat and waited to see what they wanted to do, Matt sat there and graciously sat in for the Progressive nurse who had discharged us and got ripped a new one since she couldn't be right there for me to share how I really felt about all of this.

I was so frustrated because we had to wake Cole up very earlier to be able to take medications and eat and get downtown in time for his 8:00 a.m appt. Cole threw up and we didn't have time to let his tummy settle for more medication and food. I changed him quickly put him in the carseat and met Gigi and PawPaw coming in to watch Ava. They had gotten up very early to get there in time for us to get downtown in morning work traffic by 8:00 a.m.

Dr. Bensky was there and said he could do everything. He said if Dr. Watts came back later and saw something he thought he needed to see us in person about, they would call. So off to another floor for a chest X-ray for Cole. He had to go back into the funky cylinder with a bicycle seat. We learned that the two halves that make up the cylinder can be adjusted for bigger babies and he didn't have to be squeezed into it painfully like the last tech had done.
Cole still was not happy about the whole process and let us all know. I held his sweet chubby hands above his head and tried to talk to him while he screamed at me. I wore the fashionable lead dress again for all of this.

We went back down to see Dr. Bensky and he came in and told us "everything couldn't look better." The heart is nice and small, no fluid around it. There is no murmur. He sounds great. He was happy with the way the incision and chest tube hole are healing.

ANDDDD, really good news about the cath. for the collateral arteries. He said he doesn't think they are enough of a threat to have to go in right now. They are planning on putting coils in when they do the automatic cath. before the 3rd stage surgery, which is in 2 or so years. He said if his oxygen levels start to go up or they notice more flow into the heart than they are comfortable with, they will go in before the 2 years.
We are so relieved for a break from surgeries! God has gone above and beyond answering prayers and we praise him for this!

Cole's oxygen levels were at 84/85 which is right where they want him at this stage, so we were thrilled with more good news.

Dr. Bensky feels confident enough that we can return to "normal" for us at this point. Ever since Cole has come along we have been forever changed about the hand washing and coming into contact with people or items in public. I will never be ready for Cole to get a cold or any type of sickness that lowers Cole's oxygen levels any lower than he lives at, but that's not reality.

So a great dr. visit and report and here is the little guy last night at his cousin Bella's birthday. Sorry about the read eye. Cole's eyes do something funky with the flash because we have pictures of he and Ava in the same picture and her eyes are fine and Cole's have the red. We threw in a picture of Ava for those that, this is their only way of being able to see the changes in Ava and Cole as they grow.



Thursday, July 17, 2008

Good Follow Up

Today Cole had his one week surgery follow up appt. with the pediatrician. The incision is healing well as well as the cut they had to make for his drainage tube. Cole's heart and lungs sound good. His color is nice and pink due to the collaterals bringing extra blood with oxygen to his lungs. Right now they are doing us a favor because Cole should be in the 70's for oxygen levels after this surgery. The not so good news is probably sooner than we like we will be going in for another catheterization to insert more coils into these collaterals because in the long run these will cause heart failure for Cole. We go back to see his cardiologist and surgeon on the 25th. We'll be back for updates. Thank you for keeping up with us through the blog!

LG

Sunday, July 13, 2008

Hanging Out With Nana


Cole and Ava are all about Nana . They are both all smiles with Nana here. She has come in to help out for a couple of weeks. She has already been subjected to life with the Griffin Children. We think she might prefer the grandchildren in smaller doses. We are extremely fortunate to have her help at a pretty stressful time in the house.

We are trying to work in the new set of instructions that Cole came with. We try not to jump at every cry as a cry of being uncomfortable or in pain if we move him or touch him. We cringe as we stick another syringe of medicine down his throat.

It's down the hatch with quite a few nasty medicine's for Cole so many times a day and he does not care at the time if they can help or not. He wants nothing to do with it. He has gotten to the point where he is suspicious of his bottle when it's time to eat. In spite of it all, this little guy keeps on smiling and showing us those four beautiful teeth. Our favorites are the top two with the big gap between them.

For the next 6 weeks we have been instructed to live a little like hermits. We'll have to be re-introduced into society once again.

LG



Friday, July 11, 2008

Home So Soon?


And 4 days later he arose. Just kidding. These pictures are Cole's leads and O2 monitor and they are "unoccupied." We have our baby boy at home as of this afternoon!





What a great sight!

We were given word this morning that Cole could come home today! We were nervous, but so anxious to bring Cole home. We have a list of medicines to give him, but that will shorten as the pain starts to go away. When all of this first started for us, we kept being told, Cole just doesn't look like a heart baby and we thought everyone was just trying to be comforting. Today Cole's nurse said, "When I walked in I thought I had the wrong room because I thought there is no way this baby is a heart baby. I did not believe it until I saw his incision."

Today we had a very sobering and humbling reminder as we walked past a couple that was crying in the hall of CVICU. They had shut down the entrance back there because they were doing a "procedure." Folks, they do procedures in the OR (operating room), not in CVICU. They only do procedures in CVICU if there is an emergency. We are reminded quite a bit of the miracle Cole is and what we could be experiencing. We could just as easily be those parents - walking the halls and crying because our baby boy's life is in the balance. God is good, and He is still good even when He calls one of these babies home but still, we would rather not be those folks.

After our meeting with the Nurse Manager, we were called by our nurse Jenn last night just updating us on how Cole was doing. It was a huge relief and extremely nice of them to go out of their way more than once to call and let us know. Jenn said she brought him out to visit all the nurses. She said he was smiling and flirting. That's our boy!:)

We went down late this morning and he was peacefully slumbering and looked so content. He had a new nurse this morning and she said the discharge papers were still being completed, but we could stay as long as we wanted. Matt went over to the pharmacy in Sanger Clinic because one of the medicines can only be filled at a handful of pharmacies. Matt came back from getting those filled and we signed off on the discharge papers, fed Cole one more time, and packed up the room. As always the nurses are very helpful in scavenging for loose formula and diapers to take home! Always a bonus! On the other side of that I guess you could look at it like it's being paid for anyways in this "hotel" bill.

We have our "Tubbs McGee" back home and he is relaxing on the boppy with a cold one. Just kidding. He is relaxing and seems relieved to be home. He was thrilled to be in his own crib and fell asleep almost instantly when his head hit the baby incline positioner. Thank you all who have kept up with us since the beginning of this journey and through these very long past four days! We love you all and it made a very difficult time a little sweeter! Here is a picture this evening of the little man.

LG





Thursday, July 10, 2008

Sleepover on the 8th Floor

This is mommy reporting in from a looonnnng night and today's news on Cole.

Matt left us for the night and I fell asleep on the bench in Cole's room for about 30 min. Just as I get to sleep good, there is someone barging into the room to check vital signs, collect information on Cole's last feeding, weigh dirty diapers, give medicine, etc.

From our experience earlier in the evening, I was as nervous as a cat on a hot tin roof every time one of the nurses came near Cole's crib. I did experience what the nurses go through on a nightly basis when we are not there to help. Cole was up about every hour knocking his O2 line off or ripping his oxygen out of his nose. Obviously, when he would do that it would set the alarms off on his monitors which would in turn, wake me up. When he wasn't doing that he was working up some more mucus from anesthesia and he would cough himself awake and start crying.

This morning, I was frustrated from lack of sleep and my nerves were raw from our precious baby boy being in so much pain. I looked like someone who needed to be committed by the guys in white. I laid back down about 5am but woke up when I heard Dr. Watts talking to our nurse at 6:30. He asked how Cole was and if he was eating well. Cole is still eating like a champion by the way! He's making headway with 8 ounces every time he eats. I was trying my best not to look like the insane mother I represented at the moment. Dr. Watts told me that they would probably take Cole's drainage line out today or tomorrow and he could possibly go home Saturday! Amazing!

I gave up on sleep when Dr. Watts left because Cole was ready for breakfast. I hung out for the day in Cole's room. At one point today we were trying to get some motrin in Cole after he had just eaten and he threw up most of his formula. I picked up Cole, his wires, and his drainage tube while the nurse stripped his bed and put new sheets on.

While she was gone to get some other items for his bed an older lady came in with a miniature collie. LCH has volunteers and some of them have special dogs to bring in for the children on certain floors. She asked if she could come in and if Cole would even like a dog at this age. I wasn't sure, but told her to come on in and we'd see. She held the dog close to Cole's feet so the dog's fur could rub his toes. He semi-smiled because it was the first person to come near him that didn't pull tape off his skin or pull a wire or tube out of him or try putting something nasty in his mouth. The lady said some very simple sweet words about how we would be in her thoughts and prayers and she really felt for any parent up here dealing with a child in the hospital like this. I was standing there trying to be soldier like and then couldn't anymore and couldn't keep the tears back. I haven't really let myself cry for any of this. She stepped out while I continued to give the people in white more reason to commit me.

Matt came a little after lunch and we hung out with Cole until they came in to take Cole's drainage tube out. They had already given him something for pain because they said this would be pretty painful and they couldn't give him morphine anymore. Matt and I went to the waiting room so we couldn't hear him but could watch for when they came out of the room. When they finished, they unhooked Cole from everything and let us walk the floor with him to give him and us a break.

I think I forgot to mention that as of this morning they turned Cole's oxygen off to see how he did without it. He did great all day and so they removed the oxygen line. Cole's oxygen levels will still be a little better than expected because of the amount of collaterals still in there. Good for now, but it means a future trip back for more coils sooner than we would like.

While we were walking the floor we decided to visit the Nurse Manager together as a family. We explained what had happened the night before. She was extremely understanding and helpful. We explained to her that we completely understood the shortage of nurses, the nurse to patient ratio, but that we were nervous to leave Cole in their care after our experience. We were careful to explain that we did not want the previous night's nurse reprimanded because she was truly sorry and really did care about taking care of Cole. We were concerned parents at the time, but it was or opinion that she honestly forgot to get his medicine. It was an honest mistake, but we wanted to make sure that it does not happen again tonight. The Nurse Manager assured us that it will not and she went out of her way to make sure all of the nurses and managers knew that they are to "stay on top of his pain." This means pain medicine is not optional or waiting until he is past the point of no return.

There are some pictures of Cole throughout the day. Right before we left this evening he was smiles even for our nurse Jenn. Enjoy the pictures below and have a great night!










Wednesday, July 9, 2008

Not Quite CVICU

Good evening everyone-

Let me start this off by saying that we are firm believers that we should report the facts on this site - the good and the bad. With that thought in mind, I bring some slightly negative news. I am careful not to categorize this as "bad" news since our situation is not nearly as bad as some others. That being said, tonight was EASILY Cole's worst night in the hospital thus far in his young life.

Earlier today before Cole was moved, our CVICU nurses had warned Laura that the care in Progressive is "not quite as good" as it is in CVICU. They went so far as to say things like "you will want to be in the room with him just to stay on top of them." If you read between the lines, they were saying that basically Cole would be on his own and that the nurses *wink, wink* would be there to "assist" us. Fast forward to this evening...

We arrived at LCH around 8:25 pm and as soon as we walked through the security doors, we could hear a baby screaming. We felt that lump in our throats as we walked closer and closer to Cole's room and the screaming got louder and louder and louder....it was then that we knew it was him. We walked in and nobody was in his room and he was just lying in bed executing a perfect version of his "hurt cry." We assumed that he must have been hungry so we plugged in a bottle. He ate 2 bottles while crying at the same time and the only other thing we could think of was that he was hurting. I went to get our "nurse" as quickly as I could. Once I reached the nurse's station, I told the first nurse I could find that Cole was hurting and screaming and that he needed some pain meds. Then our nurse (who was supposed to be helping us already) came into his room and after consulting her nursing school textbook, deduced that some pain meds might make some sense. Quite the Nostradamus she was! She left the room at 8:31 pm to go fetch the meds.

At 8:56 pm there was still no sign of our nurse. Apparently, the only "tylenol with codine" available was in Honduras somewhere and our nurse was on a safari to find it. I again went out to complain to the same lady as before and she ended up bringing in the meds herself.

As Cole was choking down his meds, our nursing student walked in and realized that not only did she not get Cole something for his pain, but that she had more meds that she was supposed to give him. While attempting to administer the other meds through the IV in Cole's hand, she discovered that the IV had slipped out of his hand. She calls in another nurse for "just another set of eyes" to look at his hand and sure enough, they had to remove the useless IV. This sent Cole to yet another level of screaming. This one was around the "someone stabbing me" tune...nice and high-pitched. At this point (it was 9:30 pm), Cole had been screaming for over an hour that we knew of, but who knows how long they had been letting him holler before we showed up. Had we not showed up, who knows? He could have screamed until he lost his voice. They could hear him and they did not do a thing until I complained. Later I found out that they have 4 nurses on that floor taking care of 20 children. 5 patients per nurse is a lot different then the one on one attention that Cole got in the CVICU.

At this point I start remembering the subtle hints that the CVICU nurses had dropped. I wondered to myself how I might go about nominating them for the Understatement Of The Year Award. If I worked in the CVICU, I would take the opposite approach and say something like "you are going up to Progressive, good luck with that." "Only about 3 out of 5 people make it out of there alive." This is the spite rising up in me manifesting itself in the form of sarcasm.

Finally, Laura started to sing in Cole's ear and he calmed down, starting looking at her, and seemed content. It was truly a beautiful thing. I love her voice and so does Cole Bear and we both looked at her with adoring eyes and she continued to sing like an angel. While Laura was singing, I was able to rub his beautiful noggin. There is soft and then there is Cole's head. Imagine cashmere mixed with a chinchilla fur with a side of pure silk....that is what his head feels like. I kissed him on his head as he fell asleep despite the tears that were falling from his mommy's face.

I know this description has been long and drawn out, but it had to be to explain just what degree of hell Cole was raising tonight. It was pitiful because he kept looking at us wanting us to help him and all we could do was stand around and watch.

Please continue to keep little "Tubbs McGee" in your prayers because as you can tell, things can go from "great" to "not so great" very quickly. He will be in Progressive until at least Monday and even though the Nurse Manager is going to get a piece of Laura Ann Griffin's mind tomorrow, we have a feeling the care will be "less than spectacular."

Like I said in the opening, this is a full disclosure blog. Come to think of it, that is the type of people that we are - no need to sugarcoat anything, just tell it like it is. I believe that is the type of God we serve also - a "no nonsense" type of God. Well, he and I had a bit of a clashing about my baby boy on my drive home. I am none too happy at the moment and I told God that. I try to always be real with Him and with you all and I always will be.

God Bless You all and have a great night.

Until tomorrow....

MG

Random Post

There are a few of you that we do not have personal email to that we wanted to email instead of trying to post a comment back on the blog back to your comments.

Web and Karen, if you don't mind us emailing you.

Cara, so we can play tag in email and not just the phone:)

Mary Ludeman, because your comment meant so much and it would be easier to email you as long as you don't mind!

Thanks!
Matt and Laura

Wednesday With Cole

I just got home from spending all day with Cole. I arrived around 9:30 this morning because I wanted to make sure I was there when moved him up to Progressive. When I got there he was sleeping peacefully so I just hung out in a chair for a good part of the morning. Later, He needed to take about 4 different medicines by mouth so we had to start the process of waking him up. He was hungry when he woke up so we used that as bait to get everything else in him. I fed him 3 ounces and he fell back asleep. I slipped out to the waiting room to have a little snack and make a couple of calls.

When I came back in, Cole was not happy. They had just taken out his central line (this was in his neck like an IV and went down through his jugular to monitor his heart). Next to go was one of the IV's in one of his hands. This made him even more upset. The other IV was left in the other hand just in case they need to give him something quick. This is a good idea instead of trying to find a vein and start things all over again when he needs something fast.

Once that was over I was able to hold Cole for a little bit. He calmed down and fell asleep in my arms. I have rubbed that poor little baby's head so much he might be bald when he comes home.

After this, I put Cole back in his crib and adjusted the lines and wires that are left, which aren't many, and was preparing to head home for a bit. Our nurse, Matt, had me wait just a minute and asked if I could make it back in an hour? They had a room being cleaned to get ready for Cole up on the 8th Floor in Progressive and they prefer to have mom and dad there when they move up there. It made no sense to head home then.

Our other nurse, Beth, prepped Cole for the ride up to the 8th Floor. We got everything unhooked in the room and hooked back up to a portable monitor and portable oxygen.
Cole was wide eyed and checking everything out as we traveled through the halls and up the elevator. He is HIGHLY suspicious of anyone coming near him right now, even mommy and daddy. You can tell he's not the most trusting baby right now. They said not to worry, we would have our happy smiling Cole back in some time.

I was told today that he is going to have a horrible headache for about 2 weeks from all the blood and pressure in his head right now. This will last until his heart starts adjusting to the "plumbing being re-wired" for his heart to function as close to normal as possible. We were also told not to lift him under his arms for about 6 weeks so the breastbone they had to break can heal back together. We will be scooping him like a newborn under the bottom and behind the neck for a while.

After Cole and I met his new nurse in Progressive, Jennifer, we changed his diaper and he was crying like he hadn't eaten in a few months. In response, I started one of the 2 ounce bottles for him. He went through that in no time. I gave him another bottle thinking he would only eat about an ounce of that and he polished that one off. I was getting nervous because he was still wanting to eat more and so I stuck his paci in and we sat him up and did the "pounding" on him. This is actually soothing to Cole even though it looks and sounds like it hurts. It breaks all the yucky stuff loose that is in his lungs and throat right now from anesthesia. He gave us a great burp and still wanted more to eat, so he polished off another bottle and was still making noise about wanting more. I opened a 4th bottle and he ate that with no signs of being full! Just like that, our little man has his appetite back in full force with 8 ounces! He went right out like a light to sleep peacefully. I sat with him just staring at him and rubbing his little head bald for a little longer and decided to try missing 5 o'clock traffic by a hair so I can come back with Matt tonight.
I am going to stay with Cole tonight, just because the nurses are very overworked up there in Progressive and they have one nurse to 3 or 4 patients. It's not that Cole will be on his own but it won't be like living the high life in CVICU.

God Bless and we shall converse later.

Tuesday, July 8, 2008

Only 24 Hours Later



I did post a picture of Cole with his eyes open for the first time today and I got a little smile out of him, but I will warn you that it shows his incision for those of you uncomfortable with seeing it. The pic is at the bottom of the post so please don't look if you do not want to see.

My plan was to wake up whenever I woke up this morning because I had been going since 4 a.m. yesterday, but I woke up at the normal time, Ava's rising time of a little before 7 a.m. Everyone else was still asleep so I slipped out to go sit with Cole.

We have an amazing nurse named Matt and he was back on day duty (7 a.m. to 7 p.m.) with Cole. When I got there, Matt told me that the doctors were happy with Cole's night. He informed me of all the "medicine" Cole had taken. They are keeping him very comfortable pain wise. Cole's blood pressure was higher then they were comfortable with so they gave him a little help by administering something into one of his IV's.

Cole was also awake and sort of made eye contact in the haze of all his "happy juice." It was so good to see him awake! It wasn't for long, but it was a little something to hold onto. He was in and out, but mostly out. Cole was able to have a few more wires removed. The ones that were removed were connected to one side of his heart, almost like a pace maker (to control rhythm). They left the ones on the right side on. It's amazing how quickly these little guys heal!


One of the doctors, Dr. Domnina, wanted me to hold Cole. As much as I wanted to hold him, I didn't want to upset his peaceful state. Too late for that, Dr. Domnina was not taking my weak attempt of "it's ok I'll wait until most of the attachments are removed" for an answer to wait. She was going to make it happen and she did and Cole was highly ticked, but soon calmed down after being given some morphine. After some attempts to move Cole from the bed to my lap without pulling on this or that tube or line, I don't know who needed morphine more, me or him.
Cole and I were settled in and he fell asleep in my arms. Daddy came down and brought some more items from home to make Cole feel more like he was in his own crib. He's living as G-L-A-M-O-R-O-U-S as a baby can in CVICU (cardiovascular Intensive Care Unit). We hung out and then went home to crash and head back for the evening.

We arrived right before our nurse Matt was leaving for the night. He said that Cole had had a pretty bad episode of losing his bottle. He asked if that was normal and we told him it was following anesthesia. Thankfully we were not there to see it all as it sounded like it was pretty rough because Cole got so upset. We have been told that any kind of throwing up right now after open heart surgery is super painful and not a good thing.

Cole was sleeping peacefully when we went in the room this evening and he continued until we got ready to leave. Then, his big blue peepers popped open and we both hurried over to his crib to say hello. It took him a moment to realize who we were, but once he did he started talking, which would in Cole language be "Nnnn-Dah." He got a few big smiles out and was acting like his old self. He was getting too worked up, which set off his O2 and blood pressure monitors off. He had a blast kicking and grabbing at his wires and tubes. We didn't want to leave, but it was the only way for him to calm down. We kissed his silky little head and told him we love him.

They are hoping to move Cole to Progressive sometime tomorrow and to be able to take out his drainage tube. We'll be back to update tomorrow.

Goodnight.





Morning Update - Tools of the Lord!

I just spoke to Laura who is at the hospital beside "Tubbs McGee" and she said that he is doing very well. He is off of the breathing machine and is breathing on his own. He is eating and has opened his eyes and started to look around. Although he is still "out of it" a bit from the pain medication, she said that he will hold her hand and squeeze it like a vice! That a boy!

On another note, several people have commented on how hard it is to see Cole with all of the tubes in him. It was hard for us too, but at the same time, once they explained the reason for each one and I realized the job that each tube is doing to help him, my thoughts were "dang, if all of these tubes are helping him that much and he can go home in a week, then stick 4-5 more in him and maybe he can be home in 3 days." Just thought that I would share that little nugget. :-)

We understand that some folks want to see the "full monte" and some do not. The only way to accomodate this is to post the good pics along with the bad pics and let each person decide for themselves if they want to see them. We will try to provide a warning before some of the more graphic ones going forward.

The bottom line is that all of those tubes are the TOOLS that the LORD is using to heal our little bundle of joy. Let's call them the TOOLS of the LORD.

God Bless and we hope ya'all have a good morning.

MG

Monday, July 7, 2008

Cole Before And After


This is Cole at 5a.m this morning getting ready to be taken back to surgery. Yes, even the little ones get their own backless gown.





We just came home for a little bit to get some items for Cole and head back. Everything looks good to the doctors right now from the monitor readings. We both don't have a lot in us right now and kind of scattered in our thoughts and speech. Cole should be able to come off the breathing machine soon, there is a little too much fluid in his lungs still for their comfort to take him off. They explained what each wire and tube monitored or assisted in taking fluids away or to his body. Thank you for your prayers and thoughts with us today.



"Coming Off Of The Pump."

Just received an update from the receptionist who said "The OR just called and said that everything is going very well, and that he is coming off of the pump right now."

I believe that this means that the surgery is almost finished. Dr. Watts told us 3 hours and they started at 7:30 am so that means any minute it will be over.

Dr. Watts is going to come speak to us afterwards and we will get all of the details. We will update everyone then.

Thanks

MG

Little By Little Updates

There is a woman that is in the waiting room that updates all the families when she is notified by the O.R. with a new update.

She just came over and informed us that everything is good and Cole's surgery is underway as of 7:40 a.m.

Up EARLY

When Laura's alarm went off at 4 am this morning, I thought to myself "maybe I should not have stayed up until 12:30 am watching the Yankees beat the BoSox." Nah, it was still worth it.

We were both so asleep that we got ready without speaking to each other. This was not out of spite, it was out of lack of sleep. Also, we got ready without turning on the bathroom light until the very end and then......WHAM! The light hit us like a ton of bricks. It felt like the Sun was rising inside of our bathroom. Anyway, you did not come here to read about us so lets move on...

When Laura brought Cole downstairs to put him in his car seat, his eyes were a pretty shade of dark blue. He did have a furrowed brow as if to say "ok, now I KNOW that you people are crazy because you just disturbed my sleep without having a warm bottle waiting on me." He was calm while we put him in the car and fell back asleep as we drove off into the night.

Once we checked in at Fort Knox...umm, I mean the Levine Children's Hospital, we went up to the 5th floor. Several nurses and doctors came in to see us and to check his vitals. There were at least 5-6 different people came in and asked us the same questions. "When was the last time he had anything to eat or drink?" "Is latex the only allergy that Cole has?" "Who is his surgeon?" "What was the name of his first surgery?" "What surgery is he having today?" "Did he have his first surgery here?" "Is he an only child?" "Who does he live with?"

I thought to myself, "man, are you people writing a book? If so, then leave that chapter OUT!" Of course, they knew the answers to all of these questions and were just verifying that we knew the answers, but still....at 5:30 am it was a bit annoying. At least it was to me, Matt "the Ahole in the morning" Griffin. I am sorry to be so crass, but to say that I am not a morning person would be an understatement.

Then "Millie" came in to take Cole back for his surgery. Laura handed Cole over and it felt like "behold, we send you out as a sheep amongst wolves." We both kissed him on his silky soft blonde head and handed him over to Millie. She was very careful to support him and she was extra sweet to him which made us feel a little bit better. That was at 6:28 am (they were scheduled to take him back at 6:30 am) so they were right on time.

We were told previously that it takes about an hour to set up everything and to administer the anesthesia. The plan is to begin the surgery at 7:30 am.

We are in the 5th floor waiting room at LCH so we will update the site as we hear updates.

Thanks for reading and please post any comments that you may have for us. We LOVE reading them. There is no counter on the site, so the only way we know that people are reading is if you write a comment.

God Bless and we shall update soon.

Matt and Laura

Friday, July 4, 2008

Sailor Boy & Sailor Girl

July 4th for the Griffins




We headed out into the heat and humidity about 9:20 a.m. to walk up to the route of the parade they were having here in Baxter..........the subdivision we live in. By the time we got up there we had a nice steady stream of sweat running down our backs and looking for a patch of shade to squeeze onto with everyone else. Oh the things we do to make memories!


The ones who were in the parade were throwing candy and gum to everyone, so Ava made out like a bandit. Most times she was sporting a sucker in each hand or showing everyone one of her fabulous fits. She also enjoyed pulling up her pretty dress to show everyone her beautiful belly!


We stayed for the Star Spangled Banner (sung by a gentleman in the neighborhood). Matt was roped into a water balloon toss (*insert Matt's comment here* "We should have won"), Ava used the potty, we let our red necks shine by stripping Cole down to his diaper since he was starting to represent the shade of red on our flag and that was that. We started the trek back home and were sooooooo thankful for A/C!

And that folks was our 4th of July.

Thursday, July 3, 2008

Pre-Op ~ An Almost Ouchless Day


Cole took pre-op better than mommy and daddy today. As usual, he is a trooper. It all started with very basic and simple "ouchless" procedures like weight and height measurements. Then we moved on to getting leads attached for the EKG. Cole was still "ouchless" and was smiling and talking to the nurses while they got the readings they needed.

In between procedures, paperwork was filled out and questions answered and another new face would be added to the people in the room. Some would leave and some would stay depending on whether their job was done.

Next, it was time for blood to be drawn and then the smiles were "not so much." Two nurses came in to help hold Cole while a third did the actual drawing of blood. Matt and I stepped out because we thought it would be easier to stand outside and maybe it wouldn't be so hard to hear Cole scream. It seemed like an eternity to get the blood drawn. We came in to try and comfort Cole and we even tried the good ol' bottle and by that time he was so worked up he couldn't calm down to eat. The nurses waited patiently while we tried to get a couple of ounces in him, then it was back to work on the other arm to get more blood. A few viles were needed for the testing they will do before surgery. They are testing to make sure they have compatible blood for the transfusion he will receive after his surgery.

The anethesiologist came in to explain how they would place the breathing mask over Cole's face and he would breath himself to sleep. He explained how they would have about 3 IV's. One will be in his foot, one in his neck and another in his arm. I zoned out for a minute, but I did hear that one of them will monitor his blood pressure in real time second by second.

After all of this, we went to another floor so he could have a chest x-ray. We were taken to a waiting room to wait our turn. A little while later we were taken back to a room to have the x-rays done. I had to put on a "lead gown," that had a nice lead necklace to go with it and stand in front of Cole. We placed Cole on a seat almost like a bike and his legs went down in some holes. There were two plastic shields on either side that folded around him like a cylinder. I had to hold Cole's arms above him and the poor little guy barely fit in the cylinder. His nickname of "Tubbs McGee" fit him more today than ever before. His arms were smooshed up against his cheeks and sticking out the top of the cylinder and he was screaming because the tech could barely get the cylinder closed around him and he was wondering what else we could traumatize him with. With the x-rays done we made our way back to the lobby of LCH.

Usually surgery would be the next day after pre-op, but since it's a holiday and then the weekend, we had to do pre-op today instead. By the way, on Monday we are heading in not even bright and early...we were hoping for that, but instead it will still be dark out when we leave for the hospital. We have to be there at 5 a.m. (not a misprint) and hand our precious baby boy over. We almost want to ask sometimes "are you positive that he absolutely has to have these surgeries?" But, once they tell us exactly what is going on with his heart and his oxygen levels, as scary as it is you want them to get in there as quick as they can and do what they need to do.

We have a hard time looking at that face right there, especially right now, knowing what he's about to go through in surgery and then recovery. It will be another round of not wanting him to come home without all of his nurses and doctors and monitors. Dr. Watts told us this time around that his oxygen levels will not be as high like when he left the first time and it will take about a month and a half of recovery at home to be back in the 80's. We will be quarantined again, but not as severe as the first time. Dr. Watts said with the oxygen levels taking their sweet time to work their way into the 80's after this surgery even a cold could be harmful to him.
Goodnight and Happy 4th. We'll be back on Monday to let everyone know how Cole is doing in surgery.

Matt & Laura