Merry Christmas and a Happy New Year!

Christmas Time was a blessing for us to spend with the whole family together. With Dylan and Lilly anticipation was in the air....well, Dylan anyway. Christmas Eve we went to Paul's Grandma Baker's for supper and presents. Good food and some humorous atmosphere, as always! Needless to say all Lilly wanted to do was eat the paper ;). The Weather was terrible!!! On the way home that night a van in front of us went in the ditch, being that we had my Blazer, we couldn't pull them out, so the four of them jumped in with us. It was comical seeing the eight of us in a Blazer stuffed FULL of gifts.....but it was Christmas!
Christmas morning, Paul and I opened presents with the kids at home then went off to Paul's mother's house for Paul's Grandma Gesler's Christmas. More wonderful food and children screaming as they ran around the house with their presents.
Then from their off to my Mom and Dad's for our family's Christmas! Always eventful!! My Grandma had flown up from Oregon State for her first Christmas here (She is an AMAZING cook!!). Lilly had started running a fever and became fussy. So, more presents and we all stuffed ourselves FULL before the ride home again, to put Lilly down and calm her with all of the running we had done.
Over the weekend Paul and I unboxed all the gifts and put them away. This gave the kids a chance to play with all of the toys that they had gotten over the past few days. Lilly still had a fever and was fussy. She didn't even care to eat food?! That got me worried and the doctor was called. Nothing was done. Other than that we lounged around the house. 
Today the fever is gone and being that we are going to Milwaukee New Years Eve Doctor Forster is not worried too much, he does, on the other hand, think there is a chance of her being admitted being that she is so under weight. I am scared out of my mind!!!
With the Christmas season over and the New Year fast on our toes, remembering the struggles that we have over come as well as the ones upcoming. We, as a family, have overcome some of the most dreadful things imaginable! Happy New Year to you all and God Bless

A Failed try

We started the 4mL Captopril dose on Saturday and, let me be blunt, Lilly did NOT like it!!! By the evening, she was making strange noises and her arms and legs would tense up.....in the truck of all places. It scared the living daylights out of me!!! When we got home, I hooked her up to the pulse/ox and her heart rate was in the low 70's. Needless to say I called the Cardiologist and gave her a piece of my mind.
In the begining, I had my doubts about raising the dose, which I FULLY expressed, and it happened. I was SO VERY mad!
I am starting to get worried about going to Milwaukee because Lilly is so thin. I am afraid they will go "Oh I guess she will need to stay until we can figure it out!" Lilly will be getting alot of cookies and whipped cream this week, thank goodness it IS Christmas and the food is not in high demand.
I thought that the appt. was next Monday but I found out that it is next Thursday, At least I have some more time!

I know I AM blessed even with the struggles God puts on me, my daughter, and well, my whole family for that matter! It will be a hard few weeks, but being it is Christmas, maybe he can send a Christmas Miracle our way.....

The Cardiologist

Friday Lilly had her Cardiologist appointment in Chippewa Falls. Dr. dietz wanted another echo because the one we tried to do last time wasn't the greatest. It was a little disturbing.....Lilly's heart function isn't the greatest, that's what they told us since CHW discharge, little did I fully understand what they ment. The right side of Lilly's heart is barely pumping! So we were informed to increase her Captopril dose to 4mL to see if that helps. Also she hadn't, according to their scales, gained even 1/2 an ounce in 6 weeks....not good. We are going to mess around with her overnight feeds to try to get her gaining weight. I have a gut feeling that when we go to Milwaukee after Christmas and she hasn't gained they will keep her there!!
Dylan is SO excited about Santa and talks about him all the time. We have started with our parties and he absoultly loves opening presents!!!
Besides all that fun stuff we are just enjoying being a family for Chritmas... I know there are others who aren't that fortunate. Eveyone please remember the true spirit of Christmas.....smile and just say Hi to someone to make their day. We are ALL blessed in one way or another.

MERRY CHRISTMAS !!

To Milwaukee We Go

It's no big deal so nobody get all worked up.LOL! Lillyann's Doctors have benn asking me for a while when Lilly's check up is in Milwaukee, I just kept telling them "NEVER". But, I know that it needs to be done......so on December 28th we are headed down.
Doctor Michelle Frommelt, the Cardiologist in the Herma Heart Center, is wonderful. I know all of the nurses and the Doctors will be excited to see Lilly too. Maybe even stop to see some friends!!
Anyway, besides that, everything seem to be going well with Christmas fast approaching and time is going faster!
We actually got another 2-3 inches of snow the other night too. BURRRRR it sure is cold too, mid 20's for the high's and below zero for the low's. It makes it hard to even take Dylan outside for longer than the two minutes to jump in the truck.
Being that Christmas is around the corner it is just another time to stop and look around at all you have. Give thanks to whom needs it and be grateful. Do unto others as you want done to you and stop on the street and just say Merry Christmas to someone who looks like they are having a bad day. For one it will make them feel better and for two you will feel twice as good.

WONDERFUL WISCONSIN WEATHER!!

Man doesn't winter come fast it seems like just last week it was warm enough outside to just wear a sweatshirt....Oh Wait... IT WAS. Now down to mid 20's during the day I regret taking the kids anywhere and I have to start my truck at least 15 minutes early (I hate that, I always find myself running late because of it). And on top of that it means more chance of one of us getting sick and sharing it so well. I really do love this time of year though! All the family gets together and has a good time, I just wish Christmas could be in July or even April for that matter at least I wouldn't freeze! I will never get use to the cold!
Lilly seems to be doing better! It must have been just a bug (knock on wood) but she still has a runny nose...poor thing. She is still slowly gaining weight and Dr. Forster has said to let her eat either bottle or real food. She has been loving that! Mashed Potatoes, Gerber melts, cheese sauce, although real bananas are her fav. so far!
Dylan has been crawling into her crib in the mornings at "reading her stories" :) I don't know if I should punish him or take a picture?! He is learning tht she needs her space, she now has her bubble that he CAN'T cross or else she screams bloody-murder. Being that "Chris-er-mis",as he says, is comming her is getting excited for Santa and the raindeer, even though he thinks that we should shoot them because they're deer and he loves venison! He wants a train and I keep telling him that maybe Santa will bring him one.
Me... I have started a Mary Kay so if you need any e-mail me ; ). I figure that it gives me ADULT time which I find myself craving more and more. It is amazing how much I am having just being with positive women  and hey if I can make a few extra bucks.....YEAH!

Does These Doctors EVER End?!?

Lilly, yesterday morning, was running a temp of 102 degrees and then again at 6am. By 8 her temp was starting to climb again so I called Megan...(Dr. Forster's nurse) and beingthat  had to bring her in for another synergyst shot, she told me to bring her in.

At least Lilly had gained 12 grams this week! She still had a little fever when we got there so with the tests we went.... Blood, X-ray and urine, so far they are coming back negitive, but her White cells are up. The doctor thinks......hopes that is a bacterial infection because if we cant find a reason for the fever, it may be someting internal that they are not seeing now. I should know by this afternoon what is going on. She is still feeling crummy! She was up most of the night and is sleeping about 15 minutes at a time.  I hope I canget some rest now that she IS sleeping!!

   

A Crazy Thanksgiving!

Thanksgiving at my parents.....Holidays at my parents are always interesting! Something ALWAYS happens for example, this year the dogs got into a huge fight, my mom tried to break them up with a hard-boiled egg in her hand.... you can imagine what happened to the egg :). Then Their little dog had a puppy way too early and it ended the night on a sad note. The food.....wow I always eat way too much!! Thanks Mom and Mike for another Thanksgiving I will never forget.
Lilly was up in weight a little, 5.35kg! I know it's hardly anything but I'll take it being she hadn't gained anything since she got home!! She can sit up by herself now, it may just be for 30 seconds or so....until she realizes no one is holding her up!! She is even eating food, mashed potatoes and smashed stuffing are her favorites. Needless to say she ONLY wants food now and only takes her bottle when she is tired, so most of her daily formula is overnight now.
I started MaryKay to get me out of the house away from the kids and so I can have ADULT time which has been great. I just started but I am having fun already and the women I work with are amazing. Hey it wouldn't hurt if I made a few bucks here and there either.
Dylan is doing well, trying to get him potty trained as fast as we can. Everytime he goes potty in his diaper, he breaks out so bad that the doctor gave us some steriod cream to put on it. He is ready, just lazy! I know when he is ready he will do it w are just pushing a little harder.
My prayers continue to go out to our friends and extended family down south... we are truely blessed!