Thursday, December 18, 2008

Christmas Traditions for Charlie

For Christmas, we decided to start some traditions that would include Charlie. We felt that if we didn't, that we would be leaving him out. We decided to have a "Charlie Present" every year. This will either be a present for charlie (ie graveside vase or momento) or a present for the family that brings us together (ie a movie or a game). Each year one of our children will be able to open it for him. This year it is a digital picture frame with all of his pictures and videos. We had one in the summer, but we had to return it when it malfunctioned, so we got a new one for Christmas.
We also want to hang his stocking each year, and haven't decided what to do about filling it or not. But I went to hang up the stockings this year, and Charlie's was missing! I was sure that Seth's Grammy had made one for Charlie last year; She makes one for all of her family, so Aubrey and I have one and Seth's was lost on his mission. I was so sad that Charlie's stocking was not with the others. Today, Seth's cousin called me to tell me she found it! She got it from her mom, who got it from Grammy in Massachusettes, and was supposed to give it to us last year, but never got to it. I guess I never had it in the first place! But all is well, and I will have it in my posession by Christmas Eve! Horray!
I also enjoyed going to the Festival of Trees, and felt good donating to the Primary Children's cause. This may become a tradition, and maybe we'll donate a tree in memory of Charlie one year.
This year I also made two identical wreaths with airplanes, clouds, and stars glued to it. I left one at the surgical unit at primary children's for all the nurses and techs that helped us so much there. I left the other at Charlie's grave. By the way, his stone turned out so adorable! Just his name date, and a big happy airplane!
Again thank you for all the continuous support; we feel we are doing very well. We cherish the past, and are hopeful for the future. May you all have a very Merry Christmas and a healthy and happy new year!

Friday, October 3, 2008

Charlie's birthday

Hello everyone.  Tomarrow is Charlie's first birthday.  We are working on getting his headstone done.  It will hopefully be in place next week.  We also sent our donation to intermountain healing hearts.  If anyone would like to make a contribution in memory of charlie you can do so by going to intermountainhealinghearts.org and clicking on donation.  I know I mentioned a donation before by mail, but I wanted to tell you about the online option since, for most people, it is easier.  Seth is out of town, so we will probably visit the cemetary as a family when he gets back, and the stone will hopefully be in place.
thanks.
shannon

Wednesday, August 20, 2008

donation to IHH Cont....

By the way, when you make your contribution you can make it in memory of Charlie, and they can put it in a special account where Charlie's contributions will used only where we want them to.
 
Thanks.

Donations and Fundraisers

Hey everyone!
I don't know if Seth has already sent out an e-mail for this or not, but here it is anyway...
Intermountain Healing Hearts (IHH) is an organization designed to give support to families that are affected by Congenital heart diseases.  We are donating $500 of money that was given to us to IHH.  The organization started less than a year ago and already has over 120 members!  They have been a great help to us, and are continuing to grow and help many other families as well.  It was started by a couple of heart moms who knew other families experiencing what they had already been through could use their support.  Because of their humble beginnings, they could really use donations to help finance their ideas of helping these families.  This money could be used for families that need finacial help, care packages, camps and more.  If you would like to donate, please send your contribution to :
 
Intermountain Healing Hearts
PO BOX 581306
SLC, UT 84158-1306
 
Also, for those of you in Utah, there is a 1 mile fun run/walk in Provo on September 6th.  For more information, go to http://intermountainhealinghearts.org/.  Make sure you get a registration form!
 
Thank you so much!
Shannon

Saturday, August 2, 2008

Doing Just Fine

We realize that many of you are wondering how we are doing now that it's been a month from Charlie's passing.  We are keeping busy and happy.  The week after the funeral we had a family reunion in Duschene.  That was a lot of fun with rock climbing, swimming, horse back riding, and of course being with family.  The next week I hung out with my mom in Heber.  We just got back last night from East Canyon where we stayed at a condo and swam and played.  I also auditioned for American Idol on Tuesday with my sisters Ronda and Debbie.  We didn't really expect to get past the first round, and we didn't.  But it was interesting to experience. 
Right now we need to go to a reunion with friends from Massachusetts, and we're running late.  Later I will send an e-mail with information about where you can donate money in memory of Charlie.\
Thank you everyone for all your love, support, and prayers.
Shannon

Saturday, June 28, 2008

Funeral

Hi all,
Here are our plans for Charlie's funeral.
We are going to have the viewing starting at 5:30pm on Tuesday.  This will last until 6:45 pm.  At 7:00pm the funeral will begin.
This will all take place at Lindquist's Layton Mortuary.  They are located at 1867 North Fairfield RD. Layton, UT 84041.
Wednesday morning we will bury Charlie in the Washington Heights cemetary at 4500 Washington blvd by the golf course.
We will be meeting at Lindquist's Mortuary at 9:15am then driving Charlie to the cemetary.
 
Anyone who would like to attend is welcome.
 
Please forward this email to anyone that I missed.
 
Thank you for your support.
Seth

Friday, June 27, 2008

Charlie's funeral

Everyone, we are planning to have Charlie's funeral tuesday evening.  We are working in the exact time still.  I'll send more as we have more decided.
Seth

Thursday, June 26, 2008

Wednesday, June 18, 2008

Charlie's brief Hello and Goodbye to Grandma Lorrie

It's been a while since we wrote last, so here's an update. Things have been looking really good for Charlie except his feeds. He is progressing well and he makes us smile every day with new accomplishments. He still doesn't like to eat anything by mouth, so we're working on that; in the meantime, just NG feeds.
As many of you know, Seth's mother, Lorrie, had been suffering from Rhumatoid Arthritis for many years. She had been bed ridden for quite a while. At the end of May, we were informed of an infection in one of her many bedsores. We knew this was all it would take to take her life, so we arranged flights out to see her. It was important to Lorrie to see Charlie before she passed away, so we checked to see if Charlie was okay to fly. He was fine as long as he had oxygen which took some arranging. We arrived on Thursday May 29th. Lorrie looked pretty sick and I knew it was the end. We found a moment when Lorrie was up to seeing Charlie for her to meet him. Luckily he was in a good mood. I sat him on a pillow next to her and they made some cooing baby sounds at each other. Aubrey got to say, "Hi Grandma Lorrie." After a couple of rough days, Lorrie passed away on Saturday morning May 31st. We visited with a lot of family that day and started making funeral plans. Seth took charge of the kids so I could play funeral planner for the next couple days. We had a beautiful service for her on Tuesday June 3.
We are so grateful that we were able to get there on time and that Lorrie got her wish of seeing Charlie and the rest of our family. We love her and will always remember her as a great mother, fighter, listener, and more. I cherish the days that she lived with our family, and I got to learn from this wise woman and have fun with her too. I could hardly call it "taking care of her,"-- not really.
This month continues to be crazy. I could write a lot more, but we're tired and need to give Charlie one more feed before we go to bed. Thanks for keeping in touch with us.

Sunday, May 18, 2008

Things are better

Well, it's late but here's a quick update. The oxygen tanks are gone! Yeah! His heart and lungs look just fine and we don't have another check up until the end of June. He's still not eating on his own; early intervention is coming next week to evaluate him and help me. I feed him every three hours from about 6am to 9pm, and maybe once at night. We tried to take the feeding tube out and see what he did on his own, but he only ate about 8oz a day...NOT enough. They gave me some medicine to help keep his food down, and as long as I give it 3-4 times a day, he keeps that down just fine. So things are better, and I feel like we can start moving forward again.

Tuesday, May 6, 2008

A rough weekend home

Charlie is home; he came home on Friday. It has been a rough weekend. I have to feed Charlie every three hours including through the night with the NG tube and syringe. He was pretty good at sleeping through the night a month ago, so I'm pretty disapointed and tired. There was miscommunication with the doctors which was frustrating, and I was also told that my insurance was not going to cover Charlie's formula which is $60 for a small can that I would go through in a few days. That's now cleared up and insurance is covering it, but at the time, it was frustrating. My car was packed full of stuff, and there was much to do at home. Aubrey made sure to keep me on my toes by vomitting all over Charlie! I wasn't even suppose to bathe him for a few days because they just took out his picc-line that morning. Charlie of course started throwing up on Saturday, and has continued doing it at least once a day including today. I saw a pediatrician yesturday, but he thought Charlie was fine. Oh- there's a diahrea problem too. Did I mention his stuffy nose and cough? Seth was throwing up on Monday too. There is some good news: I've done a lot of laundry and only have five loads left, I have also thrown out all the food that has been going wrotten in our fridge this past month, our mail is now narrowed down to two piles, and the weather has been great! We open the windows and Aubrey got to swing today. Seth also picked some dandelions and made a bouquet for me...how sweet...!
Some people have brought meals, and one night I was the only one that ate dinner, so I haven't really had to cook since we've been home which has been nice.
So I'm tired and grumpy, and I'm going to sleep for 1 hour and then feed Charlie again. Really things are better than it feels like they are right now, but we'll get through it. Tomorrow is another day.

Sunday, May 4, 2008

We're home again!!

I think we missed the update telling you that Charlie came home on friday. Not long after he got home Aubrey let us know that she was sick by puking all over him. Now he is sick too. We were given strict diet plans and really expensive perscription formula to feed him. Well, those plans have changed. After speaking with a Cardiologist about the new chain of events Charlie is on Pedialite (thank you Jeanette) to keep him hydrated. Hopefully this doesn't cause fluid buildup around his lungs. The doctors had us on a plan of feeding him every 3 hours. Now it is every 1.5 hours half the volume. He is feeding through a tube. Good thing because he refuses to let a bottle come anywhere near his mouth. The disgusting formula (the expensive stuff) that he has been recieving has made it so that he won't eat from a bottle. In fact, he really won't have much more than a pacifier. He makes sure it's a pacifier before it goes into his mouth. Shannon was advised at the hospital about how to help him begin to accept solid foods with this new issue. I guess it is going well. He has progressed enough to let a spoon slightly into his mouth when you open his mouth. We are glad to have Charlie back. We love his smiles. His coos are really cute!

Thursday, May 1, 2008

Chylothorax for Dummies

So I finally found something that will help everyone understand why we've been at the hospital these last three weeks. Go to https://intermountain.net/portal/site/pcmcpub/
then in the middle of the page there is a section called Health Information for Patients and Families. Under that, is a link called "Let's talk about...health Brochures." Click on that and then on Chylothorax. Here is a simplifies way to explain Charlie's condition.

The docs have been talking about us going home since Tuesday. Maybe it will actually happen tomarrow. We'll see. We're happy and I don't mind being here though.

Monday, April 28, 2008

Thank God for Nice weather

So we're still here and waiting for fluid to drain. If the surgery was successful we'll come home some time this week. Charlie's room looks awesome though!
I've felt happier this week. I'm not sure why, but there is alot to be thankful for. I think sunny days contribute to better countinences and attitudes.

Friday, April 25, 2008

Surgery for Chylo Today

So I haven't posted for a few days because every day was the same. Every day we would evaluate his chest x-ray to determine the next step, adjust his lasix and feedings, and wait to look at the next day's x-ray. Wednesday he was acting pretty grumpy and had me worried, but yesturday he was doing great and I was pretty optimistic about going home this weekend. His x-ray this morning showed a lot of fluid build up, so Charlie is having surgery this afternoon. I have to admit I was pretty disapointed after 2 weeks of trying to avoid a surgery and looking forward to going home. But we've done all we can do medically and this is the only option left to get it to stop leaking around the lungs.

They go in through an icision through his chest and close off the leak of his lymph system (for a very simplified explaination.) This is successful 80% of the time. If it's not successful...well, let's just worry about that later if we have to.

Charlie's room is pretty decked out now. We'll have to take everything down, but I'll put it back up when we're back on the floor. He'll be in the PICU for just a day or so.
We recieved a stuffed airplane from Toys R Us there isn't anything to identify who sent it. Thank you whoever did. It is so cute!
Thank you, Laura, for the Mickey Mouse airplane and for stopping by. The plane is very fun and adds to the room.
Thank you for the quotes; they are in his room as well.

Hopefully Charlie will be home in less than a week.

Tuesday, April 22, 2008

No More Chest Tube!

The chest tube came out today, and Charlie can eat by mouth. Charlie ate four ounces this morning, but he seems to be figuring out that we're giving him the yucky formula, potagen. Over the next 42 hours, we will still be watching x-rays to watch for fluid build up. If there is fluid build up around the lungs, we will have surgery; if not, then we'll be going home...
Charlie's room is looking a lot more fun. Aubrey has been doing a lot of art work in the play room, and they printed off a bunch of airplanes we've been coloring. You can come and see it any time. We are still in 3084 in surgical.

Friday, April 18, 2008

Airplanes

Yes everyone we are still here and trying to figure out this draining fluid thing. Hopefully it will be under control soon.

Since we will be here for a little while, and we will surely have future hospital stays, I would like to make things a little more fun for everyone. Charlie's room at home is starting to take on the airplane theme I've had in mind for him since we were pregnant. I would like to bring this to his hospital room, so it can feel more fun, inspiring, and more like a home.
I was hoping all of you could help me with this. Please send anything to me about airplanes: quotes about planes or flying or soaring, cut-outs I can stick on the wall or crib, signs, airplane toys.... Be creative! I'm not picky. The hospital is not that picky either. For those of you wondering how you can help us, this is it.
Thanks.
Shannon

Tuesday, April 15, 2008

Day 5 with chylothorax

Chylothorax is the name of Charlie's current condition. There is still too much fluid being drained from Charlie's lungs, so we are stopping his feeds all together. He will receive TPN in an IV behind his knee; that's just receiving the basic nutrition. He has also thrown up a couple times today; I wonder if they were trying to put too much in at a time through the NG tube. Oh well, we won't have that anymore by tomarrow. So more waiting and seeing. We'll have to see what happens when we stop all his feeds, then gradually get him eating again and see what happens when we do that.

All-in-all Charlie is just being himself: happy, playful, attentive, smiley, sleepy, etc. He loves to play with his toys and especially with Aubrey. Today the playroom had music therapy hour. The hospital just hired a music therapist to be the head of the music therapy dept. This is brand new for Primary Children's. The therapist, Lily, plans on having over ten MT's under her in the next few months! They also gave her a grant to buy over $10,000 worth of instruments! Those of you that know that I studied Music Therapy at USU understand how exciting this is to me. Charlie and Aubrey played xylophones, bells, cymbols, drums, sang, and had a great time! Charlie's eyes were HUGE the whole time, and occasionally we got a big smile out of him. He did a good job holding instruments on his own. Aubrey loved it too; she would try to sing along, and did a good job following instructions. We loved it!

Although we're not happy about staying at the hospital longer, it was generally a good day with a lot of fun. It helped to have my mom there to help me today-- Thanks mom!
Thanks everyone for your support.

Monday, April 14, 2008

Warm Sunny Day

So it was another day at the hopital with ups and downs. As fluid drains from Charlie's lungs, naturally we expect the flow to slow down. During Sunday night's shift, about 20cc of fluid drained out. Today we were hoping that that number would decrease below 10cc, so we could clamp off the tube, see how his lungs did without draining, and make steps toward going home. Instead he drained 40cc today. So we just have to keep watching. If the amount continues increase, that is bad news. Hopefully tonight's shift will go well and the fluid will stop developing and there will be less to drain, and I'll have good news in the morning. It's all just a waiting game. There is no time limit to how long this could take to clear; anywhere from a couple days to a few weeks or more. Just wait and see.....

On the upside, it was a gorgeous day today! Aubrey, me, and especially our nurse all really wanted to go outside. So we packed Charlie up and got him comfy on a red flyer wagon, and went out on the patio. Charlie was all smiles when we first went out, but he got tired fast. By the time I rented a camera from the parent resource center, we was pretty tuckered out. This is one of his first times really being outside and enjoying the sun, since it's been so cold since October when he was born. It was so bright we could hardly open our eyes!

Another adventure today: We have been moved into a room where the door does not latch. It didn't take long for Aubrey to learn how to get it open and run away. When I'm holding Charlie, it takes a little while to put him down before I can chase after her. That gives her pleanty of time to get really far. By the end of the day, every nurse on the surgical unit was keeping an eye out for her. She almost made it onto the elevators by herself!
Our blog has the pics I took today of our little outing, and some of Aubrey's favorite places to run to like a big bubble fish tank.

Sunday, April 13, 2008

Back to the hospital after second surgery

All,Charlie is still in the hospital. It seems that the fluid thing is more of a challenge to figure out than we thought. There is fat in the fluid that they are draining from Charlie's lungs. This lead the doctors to beleive that his diet needs to change. They are now feeding him some perscription formula. We don't think that he likes it. When he started on it he wouldn't eat more than an ounce or 2 per feeding. He now has a feeding tube to suppliment what he isn't eating. There is still alot of fluid draining from his lungs. The doctors aren't exactly sure how long we will be in the hospital. Today I stayed home with Aubrey because I have a cold. Shannon went to the hospital to be with Charlie. Shannon said that he played alot in the morning then slept alot during the day. He played a bit a while ago, but is sleeping again. On a brighter note, the doctor that saw Charlie on Thursday night said that his heart sqeeze is getting stronger. He was suprised to see a difference since the last time they looked was a week and a half ago. Everyone, who is not sick, is welcome to stop by and visit.