Wednesday, December 2, 2009
Friday, November 27, 2009
We are home, we came in last night. It all happened so fast. On Sunday we were told 5-7 more days and we left Wednesday. She is eating like a champ, Kaitlyn did all the hard work and earned us a ticket home!!! We snuck in and surprised everyone, it is great to be with the boys again. I have never missed anything or anyone quite as much as I missed them.
We have a lot to be thankful for this Thanksgiving! Happy Thanksgiving to everyone!!!!
Friday, November 20, 2009
Thursday, November 19, 2009
Here's some of her most recent events:
- Her heart rate dipped into the high 60's overnight, they had to temporarily put her on a pacemaker (ugh). They continue to have her attached to the pacemaker, not turned on, in the event her heart rate dips again.
- Her lungs are wet, this is normal to a certain degree due to the excess fluid from the heart surgery, the fluid that doesn't make it out the drain weeps into her tissue and ends up in her lungs. Kaitlyn has more then they would like to see. There was talk of placing a chest tube in to drain the fluid off. They ordered an ultrasound and the fluid looked better, for now they just increased her diuretics, but will watch it close with more Xrays and ultrasounds.
- Her catheter was removed today, one more thing out!
- She started tube feeds this morning. She gets less then an ounce every few hours and they will increase it over time, she tolerated it well.
- For some reason her right leg is cooler then her arms and left leg, they are watching it, they found a pulse in her leg though, they don't seem too worried.
- They continue to sprint her (this is when they try to allow her to breath on her own with little to no help from the vent). She's doing OK. She isn't getting rid of as much carbon dioxide as she should. Again it is only 2 days after surgery so she is still within the normal range of where recovery should be.
- Kaitlyn got moved from the pediatric cardio ICU to the normal pediatric ICU this morning. They needed her bed for a baby just out of surgery. I wasn't thrilled, I loved where we were at. All the nurses specifically worked on heart babies all the time, and all the doctors were constantly around. Her new nurse is great! It was just stressful watching them move her. She was the chosen baby because she was doing better then most. I guess that's a good thing, but to us this still seems so critical.
Keep the prayers coming! Thanks again for all the support!
Grandpa Skocelas came to spend the morning with his grand baby today. He's been all over the state this week driving back and forth so he can be with the boys and Kaitlyn. He heads back to TN Saturday morning. He needs to be with my Mom now. Thank you to my Aunt Connie for flying to TN to be with my Mom so my Dad could be up here.
Wednesday, November 18, 2009
Tuesday, November 17, 2009
Monday, November 16, 2009
Tomorrow morning my sweet angel at just 3 months old will have open heart surgery. Just typing those words makes my chest tight and I have to remind myself to breath. She's my hero, the love of my life! I thank God for her each day! Tonight I'm struggling with a lot of internal turmoil and the ONLY thing that is getting me through is turning it all over to God.
In Christ alone I place my trust!
Today Katie had pre op all day. We arrived at 8:30. The morning started with a chest x-ray. That was uncomfortable to watch. She wasn't in any pain or discomfort though, she didn't seem to mind. I'll post a picture of that crazy contraption later, they had to strap her in sitting up to get a good picture. You would think with all the modern technology they could come up with a better way to get good x-rays. Next was a sedated echo. She took some oral medication and drifted off to sleep. They did a very thorough job, it lasted about an hour. Next we fed her and met with a Cardiologist where we talked more about her heart defect (AVSD) and surgery. The day ended with blood work. That was the worst part and the only time she felt pain. I was just about to ask for another phlebotomist when she finally got a vein. After that we went to our room and got settled. She was so happy tonight. Thank goodness she has know idea what the morning brings. I will write more tomorrow with surgery updates.
While your praying for Kaitlyn please say an extra prayer for my Mom tonight. This afternoon she was diagnosed with Lymphoma. I'm not quite sure why all this is happening like this. Mom, I'm sorry I couldn't be with you today. A girl is never to old to want their Mom, I sure wish you could be here. Kaitlyn will be better soon and we are going to help you fight this. I Love you!
Wednesday, November 11, 2009
There is a lot to get done before Sunday. The biggest stress we've had is waiting for the official approval from the insurance company to allow Kaitlyn's surgery to be performed at the University of Michigan. We've been fighting this battle since we learned of her heart defect (complete AVSD) back in June. Surgery was scheduled last week. The doctors seemed confident the surgery would get covered but Blair and I remained less optimistic. We would believe it when we had an authorization number. The days have continued to come and go and no official authorization. Our family and friends have been rearranging there lives for this and all I could think is that our plans would fall apart at the last minute.
Tears of joy came this afternoon when we received the phone call that she is 100% approved. I literally felt weight being lifted from my shoulders. The fight was soooo stressful, but we won the war. We fought for Kaitlyn and it payed off. Her surgery will be performed by an amazing surgeon, Dr. Richard Ohye, at one of the top pediatric cardiology hospitals in the nation. (sigh) God is good!
We will leave for Ann Arbor either Sunday evening or very early Monday morning. Her pre-surgery testing will begin Monday morning at 10am. She will get a chest x-ray, sedated echo, EKG, and blood work. We will meet with an anesthesiologist and a cardiologist. Tuesday morning the surgery is scheduled for 7:30 AM. Her surgery will last approximately 4 hours. She will then go to the PICU where she could be 3-5 days. Once the ventilator is removed and she is breathing well on her own she will get moved to the general care floor. Her estimated stay is 10 days give or take. All healthy adult visitors are welcome! Hospital policy due to H1N1 is no kids under 16. The hospital advised our family and friends to watch a video to help us prepare for surgery and Kaitlyn's recovery. If you plan on visiting take a peak at the video. Thanks again to everyone for all your continued prayers. I hope to keep updating through her surgery and recovery.
Please, everybody look at me!
Today I'm five years old, you see!
And after, this I won't be four,
Not ever, ever, any more!
I won't be three-or-two-or one.
For that was when I'd first begun.
Now I'll be five a while, and then
I'll soon be something else again!
-Mary Louise Allen
I can not believe Brady is turning five. The years are flying by. This past Saturday we "threw" together a party. Normally I spend much time planning a party for the kids. I really enjoy having our friends and family over. My favorite part is making a special cake. Brady's actual birth date is the 17th. Because Kaitlyn's surgery is scheduled that day we had to do things different this year. I made a few quick calls to local friends, my dear friend Tiffany made an awesome cake and we had a party. My mother in law watched Kaitlyn for us, we had to keep her away from all possible germs. It was a great day! Thank you to everyone who helped make this day special for Brady!
Thursday, November 5, 2009
Little Kaitlyn went to the doctor again today. We seem to be there a lot these days. She weighed in at her highest weight yet 10 lbs 14 oz. She's been playing the gain an ounce lose an ounce game all month. Maybe she can reach 11 lbs before surgery. The last two days she's had this crazy rash. I thought it was because of her low fever and the virus she's been fighting. The doctor said it looks like an allergic reaction to the amoxicillin she was on...lovely! Good thing there are several antibiotics to choose from since she can no longer take anything from the penicillin family...ugh! If its not one thing its another!
Please send cards to:
1141 Fountian Viewcircle
South Lyon, MI 48178
His story is in the Detroit news, read here.
Feel free to reblog this to reach as many people as possible!
Wednesday, November 4, 2009
Friday, October 23, 2009
We have not given up on MOTTS. Hopefully we will have an appointment scheduled to go there by Monday. Time is running out but I'm convinced that what ever is meant to be will happen. I'm still sure that MOTTS in Ann Arbor is the right choice, and I will continue fighting as long as I can.
Thursday, October 15, 2009
Wednesday, October 14, 2009
We were told we would start to see symptoms of her heart defect, which unfortunately is the start of heart failure, between 8-10 weeks of age. Kaitlyn is 10 weeks old and her symptoms are here. About a week ago she started sleeping ALL the time, and rarely woke up wanting to eat. When she eats she gets tired quickly and stops. Its been a challenge. I've known since I was 27 weeks pregnant that she had this heart defect. I prepared myself, or so I thought, but honestly this is horrible to watch. She lost weight the last 2 weigh-ins at the doctor's office. Thank goodness she packed on the pounds the first 2 months. She's on two medications to help her heart, digoxin and lasix. Last week they increased her lasix and that has seemed to help some. We also started increasing the calories in each bottle to help her maintain her weight and hopefully gain again. I am anxious for her surgery. Hopefully she can still get bigger and stronger beforehand. The success rate is very high for this surgery! I've read many stories about kiddos with this heart defect and they instantly become stronger after the surgery. Please pray for Kaitlyn. She is a strong little girl with a bumpy road ahead. God has a special plan for this beautiful little girl.
Monday, October 12, 2009
We got an early start to our weekend on Thursday. Patti and Marissa from To Love Endlessly were in Muskegon. They came to Michigan to walk in the Grand Rapids Buddy Walk with family. It is such a small world. They live in North Carolina, we connected through blogger. We met up for lunch. It was such a nice visit. I am so glad they were able to fit us into their busy schedule.
On Friday I went to my first local gathering of Ds moms. There were about 10 women there with children of all ages. Even though they were strangers, it was such a comfortable 2 hours. Since that morning I've ran into many of them, mostly at the Buddy Walk. I look forward to building friendships and a support system.
Saturday morning was the Buddy Walk. It was a cold, crisp Fall morning. Twenty seven friends and family came to support Kaitlyn and the DSAWM. Our team raised $680. Thank you so much to everyone who donated their time and money to support the Down syndrome Association of West Michigan. That afternoon we headed to the Post Family Farm for their fall festival. It is a one stop shop for fall fun, pumpkins, hay rides, corn maze, petting zoo, and pumpkin donuts are just a few of the fun options they have. Check out the video at the top to see a glimpse of our weekend.
Sunday was our 6th wedding anniversary. Where have the years gone? We spent most of the day at home, we all needed a day of rest. My sister Jenna was nice enough to watch all three munchkins that evening so we could go out for dinner. Thank you Jenna! And a big thank you to Blair my amazing husband for being the rock of our family! I love you!
Wow, what a weekend!
Tuesday, October 6, 2009
In honor of Down syndrome awareness month- Good education regarding people first language.
I am reblogging this from Patti at To Love Endlessly, http://www.bradleyandpatriciah.blogspot.com
The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs".
Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."
Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."
Here are some basic guidelines for using People First Language:
1. Put people first, not their disability* A "person with a disability", not a "disabled person"* A "child with autism", not an "autistic child"
2. Use emotionally neutral expressions* A person "with" cerebral palsy, not "afflicted with" cerebral palsy* An individual who had a stroke, not a stroke "victim"* A person "has" Down syndrome, not "suffers from" Down syndrome
3. Emphasize abilities, not limitations* A person "uses a wheelchair", not "wheelchair-bound"* A child "receives special education services", not "in special ed"
4. Adopt preferred language* A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"* "Typically developing" or "typical" is preferred over "normal"* "Accessible" parking space or hotel room is preferred over "handicapped"
Guidelines from the National Down Syndrome Congress
Monday, October 5, 2009
My friend Kim and her mom Brenda came to meet Kaitlyn on Friday!
Making cinniman rolls, they were soooo good! http://thepioneerwoman.com/cooking/2007/06/cinammon_rolls_/