2 years ago...

Two years ago, today, was the hardest day for me, my family, and close friends.  It's hard for me to believe you would have been almost 2 1/2 years old.  I know that you are very well taken care of...but we can no longer see, touch or smell your baby soft skin that smells of fresh baby powder.  There are days where I so wish I could just see you and hold you one more time, but in my heart I know that you are no longer in any pain.  But it doesn't mean that I still don't love you every single day of my life.  I know that you had a very big purpose here on earth to teach many people about Trisomy 13, and that every day is a gift.  I know you touched so many people's lives, and didn't even know it at the time, but I understand it now.  I will always carry your footprints with mine.  I love you Khloe Violet Schaeuble!

Love,
Mommy 

4 months have past...

Hello everyone I thought I would send an update on how everyone is doing in our household. We are all grieving in our own way, but time seems to be helping. I know it's still so fresh, but we are doing well communicating our feelings so we know if one of us needs space. Kadence did go through a time frame where she had so much anger she didn't know what to do that she was having lots of temper tantrums, but those have stopped...thank goodness. I would like to share some photos of our precious Khloe to celebrate her life. I hope you enjoy these photos!! These photos are very special to me as most of them were taken the weekend before she passed away. I know she is in a better place, and I will always remember and love her every day of my life :)

Thank You for your kind words

Today Khloe would be 5 months old. I woke up today, and I saw so many tweets on twitter and many posts of facebook! We are truly blessed to have wonderful family and friends to support us. Also I am truly blessed to feel the LOVE from all the BH sisters! We truly are one big family, and I love each and everyone of you for your kinds words. I don't know if words can express all the LOVE that I feel from everyone. Thank you for supporting our jouney with Khloe, and celebrating her life! I believe every life no matter how long they are here on earth with us...are here for a reason. Khloe taught so many to never give up no matter how many obstacles you may have to overcome.

Her service is being held at Martens-Laemmerich funeral home in Menasha, WI on Thursday March 3, 2011 (2:30pm-3:30pm viewing, and 3:30pm- 4:30pm service)

This was one of the hardest days to keep going, but I will do anything for my little angel and be strong for her and always carry her in my heart.

Our Little Angel...

This is probably the hardest thing I have ever had to type...our little angel Khloe...her jouney here on earth has ended and her new journey in heaven has begun. She will be missed so much, but just knowing that she is not in pain or suffering anymore helps. She has touched a lot of people in a short amount of time. Even though she was so little...she was a fighter. Every day we had with Khloe we looked forward to her "coo's" and her smiles. We knew that she knew she was loved by her smiles everyday. Kurtis, Kadence and I were here today to say goodbye and hold her one last time. WE LOVE YOU KHLOE VIOLET SCHAEUBLE!!!! Forever in our hearts and we will always have the memories.

Update on Khloe

Two weeks ago Khloe gave us a scare...we thought we were going to lose her, but she is our little fighter and I am happy to report is doing better. Last week after that episode Khloe developed pneumonia. She is on amoxacillin now, and doing much better. We had many sleepless nights suctioning out Khloe because not only was she coughing up phlem, but she has been teething and it creates lots of extra mucus. We have been to the doctor 6 times in the last two weeks. I am going to do the "happy dance" as Khloe does not have a doctor appointment until March now :) We had an appointment with a neurologist, and she had an episode where she turned purple right in front of him. (then she had two more episodes) He was able to diagnose her with cyanotic breath holding spells. One good thing is we know what she is having is created by her getting upset or by pain. However there is no cure for this. Only most outgrow this with age. He does think she may be having a certain kind of seizure, but he could not help us with that until he would see it on an EEG. When Khloe has her lip surgery she will be monitored with an EEG since she will be in the hospital. We also saw an ear, nose and throat doctor this past week. He will be putting tubes in her ears when she has her surgery. An audiologist confirmed Khloe can hear out of her right ear, and her left ear has lots of fluid by the ear drum, so her hearing may be muffled in that ear. The doctor hopes after putting the tubes in she will hear much better out of the left ear. We had lots of positive information this week, and I can't believe tomorrow is Valentine's Day! Happy Valentine's Day everyone :)

Surgery Date Set

Hello everyone...it's been a while since I last wrote anything. I thought I should share some more photos of Khloe at 3 months. I went back to work on January 3, 2011. My first day back to work Khloe turned purple, held her breathe, and stiffened her body for the sitter 4 times. We are not sure if she is having seizures, or if she is just in a lot of pain. So the nurse has been calling these "episodes". My first week of work she had 7 episodes. We started giving her tylenol every 4 hours, and those episodes have really decreased. They still happen, but not every couple hours like they were happening. She has been more herself again, and a happy baby. I miss being at home with her everyday, but it so good for me to get back into a normal routine. (although what is normal anymore, right?) We have been traveling back and forth to Milwaukee for follow up doctor appointments, and now we have Khloe's lip surgery set for March 30, 2011. It's so real now that her face will look different...they will also create a nostril for her. My baby is going to look different, but it will be for the better! This week she weighs 11lbs 3 oz. (Last time she was weighed with all of her clothes on, and today it was her true weight.) I cannot believe she will be 4 months old next Tuesday!!! It's definitely an adventure with her everyday :)

Update on Khloe's feedings

Hello everyone...Khloe has been home from the hospital for almost two weeks. We were only supposed to be in the hospital for one night, and we were there for 4 days. She now has a G (gastromony tube) placed in stomach. She was not tolerating her feedings very well the first couple of days, but she is doing much better now. She went backwards in how much she eats every three hours...but she is finally making some forward progress. I am happy to report she is eating 100 mls every three hours. She weighs 9lbs 11 oz this week. She has been giggling in her sleep this week, so it makes me feel that she is a happy baby. Although she does not sleep very well through the night, but it is getting a little better. Kurtis and I tag team her night feedings...I go back to work next week Monday. I am ready to go back to work, but I am really going to miss my baby! We will have two people coming to the house to watch the baby...that is truly a blessing. Our little miracle is now almost 3 months old. This next month we have lots of doctor appointments to figure out when the doctors want to close her cleft lip, cleft palate, and look at her skull to see if they can do a bone graft. Thank you for all of the kind thoughts and prayers! I truly believe Khloe is a fighter and with positivity and lots of love in her life it is making her thrive everyday!!! :) Happy New Year everyone!!!