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!!!

After Khloe's first surgery

Hello it's been a little while since I have wrote anything for her baby blog. Most of you know Khloe's first surgery was on December 15, 2010 at Children's Hospital in Milwaukee. Everything went well we just needed to stay longer than expected because she was not tolerating her feedings very well and the doctors wanted her back up to 95 millileters before she could go home. We were finally able to go home on Saturday December 18th. When we pulled into the driveway Khloe puked all over herself in her carseat...yes, wonderful...at least she waited until we came home from the hospital. If she would have done that at the hospital we would have had to stay one more night. Although our night didn't get much better...she did not tolerate her feedings at home for the next 18 hrs or so. She continued to throw up her feedings, and we were getting worried. We tried to give her some pedialyte and that seemed to work a little. Sunday she started to tolerate her feedings better, and now this week she is doing great. She has the occasional spit up, and I have to get used to burping her tube. If I hold the tube lower than her stomach residual stuff will come out of her tummy...disgusting I know...more than you probably wanted to know. :)
We are getting ready for the holidays, and excited to still have our miracle here!!! On Christmas Eve she will be 12 weeks old. She is the BEST present I could have asked for this year!! I hope everyone has a safe and blessed Holiday!!! From our family to yours :)

Khloe's First Thanksgiving

This week was hectic as usual. We went to Children's Hospital on Tuesday November 23, 2010 to meet with the surgeon who will do Khloe's surgery. He told us she definitely will benefit from a GI tube. Her mouth will be more comfortable, and she may take more millileters by bottle once her OG tube is removed from her throat. They also will remove her extra digit on each hand. I am nervous for her surgery, but I know it needs to be done. Surgery is set for December 15th. She will spend one or two nights in the hospital. So we will be road tripping to Milwaukee again soon. Khloe has gained some weight she is now 8lbs 9oz....yay!!! She is eating around 85 ml at each feeding every 2.5-3 hrs.
We had Thanksgiving at my parents house, and this was the 2nd time Khloe had been to their house. She did really well...she slept most of the day, and curled up with her Aunt Lori. Our Thanksgiving was nice, and we all had so much to be thankful for this year!! Glad Kurtis was with us this year. I know Kadence was really happy to have her daddy here this year. I thank god everyday for my wonderful family :) I hope everyone had a wonderful Thanksgiving also!!

Hugs,
Sandy

6 weeks

On Friday November 12, 2010 - Khloe was 6 weeks old and she weighs 7lbs 15oz. On this day Khloe smiled at me and her daddy. She also reached for the kitty and pulled some of his hair...lol. I don't know if our cat (Woody) will be coming by her anytime soon :) Next week Tuesday is a really big week for us...we will find out when Khloe's surgery will be for her G tube. Khloe's head is now healed and there are no open spots on her little head. I am finally able to take her with me if I have to run and errand. I am still being very careful where I bring her because of cold and flu season. So most of the time we are hanging out at home. Thanksgiving is next week...I hope everyone has a wonderful Thanksgiving. I am so Thankful for so much this Thanksgiving!!! I am thankful for my family who has been so helpful throughout this journey, and my friends for supporting me and my family. MOST of all I am thankful for Khloe! My little angel.

Tuesday November 9, 2010

Hello...

Yesterday I scheduled an appointment for her GI tube. We will be going down to Children's Hospital in Milwaukee two days before Thanksgiving to find out if Khloe is ready for this surgery. This surgery seems scary, but I think in the long run Khloe will be more comfortable with her feedings and not want to pull out her feeding tube everyday. I put the little mittens over her hands everyday, and last night I thought I could keep the mittens off. I woke up to Kurtis telling me that she pulled out her feeding tube. :( Khloe's nurse is such a sweetheart...she is so good with children, and Khloe seems to know when she is here at the house. Today Khloe's weight was 7lbs 4oz. She has lost an ounce since last week, so now the doctor is trying to figure out how she can put on some weight. I might need to add more formula to my breast milk that I pump and give her in a bottle, or I might need to give her a different kind of formula that has more calories. Typically trisomy babies have a hard time gaining weight, but I am not sure of why? Not sure if it's her metabolism or if her body just absorbs the calories? I do know that she is up to 65 ml every 2.5 hrs, and I may be able to bump her up to 70 ml once I hear from the doctor. She has been going up 5 ml every week, and the doctor and nurses have been watching how she tolerates her feedings. So far she has not spit up too much, and her little tummy is handling everything just fine. This is just a little part of the day in the life of Khloe :) My little ray of sunshine!!

Monday November 1, 2010 - One Month

Happy One Month Birthday to my little peanut Khloe. She is doing so well. I never thought in my wildest dreams that I would get to take her home much less get to spend so much time with our little miracle. She has been a true blessing for our entire family. We are savoring every second with her...Kadence has shown us some jealous sibling rivalry already. One day Kadence got off the bus, and wouldn't come in the house. She sat outside in the front yard and yelled I am not coming in the house because Khloe is in the house. Thank goodness my mother in law and my father were at the house. They convinced her to come in the house especially because it was on one of the really windy days last week.

I haven't had much sleep lately, but still enjoying every second with Khloe. An update on her head...it is almost healed completely on the top. Maybe another week and there should not be any open wound spots. No bone has grown in, so we will have to deal with that when the time comes, but all the skin growing in is pink and hair is already growing on the top of her head. She is now 7lbs 5 oz, and growing at her own rate. She amazes me everyday. Soon we are looking at a "G" feeding tube that goes directly to the belly. This should be more comfortable for her, but will require a surgery and we will meet with doctors soon to figure out when she will be ready for the surgery. This tube will be better as she keeps pulling out her oral feeding tube, and the nurses have to keep putting it back. The "OG" feeding tube is not very comfortable for her as it is so dry in her little throat. :(

All of us are doing well and hanging in there. Kurtis is back to work, Kadence is doing well in first grade and I am enjoying my time at home with Khloe. I know this journey is hard to walk as we all know Khloe's condition in terminal, but having all the love and support around us really does matter. Thank you so much for your prayers and kind thoughts for our family. :)

Hugs,

Sandy

Friday October 1, 2010 - Khloe Violet Schaeuble

Today is the day. I woke up and I already had my bag packed...but I kept double checking the items in my bag. I don't know why, but I think because I am so nervous for the unknown. Kurtis finally said it's time to go. We get to the hospital and the doctor had a few appointments at another hospital, so he decides to wait until around noon to induce me. I was already at 4 centimeters when he checked me. Kurtis and I decide to walk to make the time pass by. The room we are in at the hospital is a suite that people pay extra money to have for privacy. It overlooks the water and also the landing pad for the Theda Star. Patiently waiting for the doctor...I nervously keep looking at the clock.
The doctor returns at 11:45am and he breaks my water, and I decide to take a whirlpool bath before the pain starts to get worse. About an hour later I was back in bed starting to get pitocin. My contractions are getting stronger now, and I ask for an epidural. Thank goodness I asked for it when I did because there was an emergency c-section going to happen that afternoon, and they did my epidural right away otherwise I would have had to wait until after the c-section. I was ready for it right away. My family all were in the waiting area, and after the epidural kicked in they wanted to go somewhere to get something to eat. I told them all to go, but part of me was just realizing I had the urge to push. I told the nurse that I feel like I need to push, and she checked me...I was at 10 centimeters and fully ready to go. Someone texted my parents and let them know. They all turned around after just getting to the restaurant with everything to go...lol! Sorry to my family I should have just kept you at the hospital! After I received the epidural I went from 5 centimeters to 10 centimeters in one hour. I was ready to push, but my husband was visiting with people in the waiting area and my doctor was doing the emergency c-section. The nurse told my husband it's time, and I don't know if he was quite ready. Also my doctor was relieved by another colleague to finish the c-section, so he could come to my delivery.
I started to push, and I realized how many people were in the room with me while I was pushing...4 doctors, 1 nurse, Kurtis and myself. Once the baby head was starting to crown I saw the doctor's face and it went as white as a sheet of paper. Then he told me the baby has lots of hair, but I knew something was right so I just closed my eyes and kept pushing. She was out two pushes later. I pushed for only 12 minutes. I am so happy I was able to get Khloe out of the birth canal fast. Next thing I knew she was on my chest and so beautiful!!!
Everything after she was born went so fast...She was baptised right in the room after the nurse cleaned her up. She had lots of vernix (white stuff on her skin) on her when she was born. Also the organization Now I Lay Me Down to Sleep came and took lots of professional pictures. Also Kadence got her first picture with her baby sister...NOW she is a BIG sister and so Happy!!! :) Lots of my close friends were also there to support me right after delivery, and I thank every one of you. I am so blessed to have such a great support system in my life full of friends and family.
After all the pictures were taken the nurse showed me Khloe's top of her head. She didn't have the skull bones that all babies have plus her skin that she did have protecting everything broke open when I pushed her. The other abnormalities she was born with are that she has 6 fingers on each hand but the extra pinkys are just like a skin tag, cleft lip and palate, it appears one foot may be a club foot, and a heart murmur. I know our little angel has lots to overcome, but she is a fighter and I will cherish every second I get to spend with her!!!! She is truly my miracle!!!!! I love you Khloe :)

Thursday September 30, 2010

Hello everyone...tomorrow is going to be a big day in the Schaeuble Family. I am getting induced tomorrow morning at 7:00am. I have been so full of mixed emotions today. I hope everything goes smoothly tomorrow morning, and we will be able to meet our little angel. Her name we have picked out is: Khloe Violet Schaeuble. I know I have said this before, but I know I have made the right choice even if I only get to hold my little girl for a few moments. She has made an impact on this world even before she is born. I look forward to sharing the news of her birth with all of you tomorrow. I better get some sleep...since 7:00am will be here before I know it!!!!

Hugs,
Sandy

Doctor Appointment

Hello again...I just realized today it's Friday September 10, 2010...one day before September 11th. I had a routine weekly doctor appointment this morning, and today I am dialated to 2. With my first child I dialated early, so I am hoping that I do not go too early. I still have been working 4 hours per day and coming home to put my feet up the rest of the day. I have a hard time sitting still and this is forcing me to stay home so it's a good thing for me. Today the doctor decided to do a scheduled induction for me if I make it that far...Wednesday October 13, 2010 is the day on paper now, but for some reason I don't know if I will make it another full month.
I just wanted to say Thank You to everyone who has supported Kurtis and I throughout this entire journey. It is really starting to set in...it's almost time!!!! I will keep you updated.

Hugs,
Sandy

Friday September 10, 2010

Hello everyone...it's been a while since my last post to this blog. A lot has happened in the past two weeks. My blood pressure has gotten higher so my doctor has restricted me to working 4 hours per day. It is a very strange feeling to work a half day when I am used to working 50 hours plus per week. My feet and ankles are very swollen, but at least with this pregnancy they didn't turn into true kankles until this week. Now I don't know if I will see my ankles until after the baby is born. Last week we had a healthcare conference with my doctor, the neonatologist, nurses and the nurse supervisors in the birth ward. That appointment has made everything turn very real. I am starting to notice my stress level may not always show on my face, but my body is having a hard time keeping up so it's a good thing I am slowing down and not burying myself in my work anymore.
This week both of the ladies who have been pregnant along side of me at work had their babies. They both had baby boys, and I am so happy for them!!! Yesterday I realized I am the only one that I know of left at work who is still pregnant...I started to get emotional at work realizing that it's almost time for us to see our little girl. Last week her heartbeat was strong, and she has been moving constantly so I know she is a fighter! I have another doctor appointment this morning. He will check and see if I am dialated today. I am a little nervous, but remaining strong for myself and the baby. I will update everyone again after my appointment this morning.

Feelings and Thoughts

This past week was rough with my blood sugar, and I still haven't heard back from the doctor if I will be put on insulin for my gestational diabetes. But the dietician already had me practice using insulin and giving myself a shot. It wasn't as scary as I thought it would be, but I am a little nervous. At work we are on mandatory 10 hours of overtime, and if anyone knows me I work a lot of hours, so when the doctor pulled me off overtime and put a restriction I can only work 40 hours per week. It was a little weird to work only 40 hours.
We told Kadence this past week about that baby, so she knows the baby is sick. She cried and I cried with her. She told me she wants to be a BIG sister so bad, and I told her...she will always be a big sister! Kadence has been a little more clingy to me than normal, but that is to be expected. The one thing she asked me was if she will still get to hold her baby sister? I told her of course you can hold your baby sister when she is born. That broke my heart...when it comes to Kadence I have a hard time keeping myself from breaking down. I will be making sure Kadence is okay once the baby is born. She is my entire world.
The weather this week wasn't so kind to my body...now my hands, legs, ankles and feet are swelling up. The good thing was I made it to 32 weeks until my wedding ring won't fit my finger anymore :) Only 8 more weeks to go 43 more working days. I am anxiously awaiting everything, but at the same time worried about the future and what is going to happen. I thank all of my friends and family again for your support!! I could not do this without you:) Especially to my husband...I LOVE YOU!!!
Something positive this week :)...my husband let me buy a ticket to go on The New Kids Cruise next May!! I am so excited!!! The cruise sold out yesterday when it went on sale, and my friend and I were able to get on the boat!!! It is giving me something exciting and positive to look forward to! I am excited to meet so many of my friends I have met on twitter on the cruise! Of course excited to see all of NKOTB on a boat! I am a Donnie Wahlberg girl after all these years with Jonathan Knight tendencies! LOL!!! They make me feel like a teenager all over again...whenever I see them in concert, since their reunion tour, I feel like I am that teenage girl who doesn't have a responsibility in the world...until the concert is over....then I can go back to the real world.

August Ultrasound

Today Tuesday August 3, 2010 was the first time I saw the baby's face. I know her face was not perfect, but she was beautiful! Once again she did not turn towards the camera so the doctor had to shake my belly to get her to look for the ultrasound picture. I have a few profile pictures, and I even have a silly one where she is sticking out her tongue. She was sucking her thumb a lot during my appointment. Kurtis was unable to go to this appointment with me, so my sister-in-law Lori and my good friend Kelly came with me. I knew I couldn't go alone. Thank you girls for coming with me!!!
After talking with the doctor the diagnosis was still the same, and the baby weighs 3lbs 11oz and I am 31 weeks along. He said my placenta is still doing very well which usually isn't the case with trisomy pregnancies. Also the baby is on target for a normal birth weight which he was surprised about. The cleft lip and palate opening has started to close some. I am happy to report we believe Kadence should be able to see her once she is born. This is a huge relief off my shoulders...
The next day I had a doctor appointment for my gestational diabetes...I have to prick my finger 4 times per day, check my keotones, and next week possibly have insulin given to me. My blood sugar levels are higher than they thought, so just another obstacle I have to overcome, but at least it is only for the next 9 weeks. Crossing my fingers nothing else will happen until the baby is born. I could really use a little break from all the surprises, but I am taking this journey in stride hoping someday I can help someone else who may be in my position. I love this baby and know her life in this world however long it will be really does matter! I love you baby girl :)

Another Day at the Doctor's Office

This past week I had to retake my glucose test because I failed the first test by 3 pts, so I spent 3 hours in the doctors office. On Wednesday, July 28, 2010 I found out I have gestational diabetes, and next week I will meet with a dietician. I don't understand why this happened since I have only gained 2 lbs so far the duration of my pregnancy. Tuesday is a BIG day for us...I have an ultrasound to finally see our baby's face. I am scared, but I know I just want to be prepared for when she is born. I want to cherish every moment I have with her instead of being shocked on how she looks when I get to hold her for the first time. I will have more news to update everyone next week.

Hugs,
Sandy

A New Beginning

Hello my name is Sandy Schaeuble, and I would like to share with you the story of my baby. She is due October 15, 2010. My husband and I were very excited when he came home from his deployment in Iraq. We found out I was pregnant about a month after he came home. We were very surprised and felt very blessed to find out I became pregnant so fast. We have one daughter, Kadence, who is 6. She can't wait to be a big sister!
I will never forget the day we found out our baby has full trisomy 13. Thursday June 17, 2010 was a very anticipated day with an important doctor appointment...after two ultrasounds and an amnio test with a specialist. I knew the test results could not be very good since the doctor wanted to talk to us in person and didn't want to give us the results over the phone. When I found out the news I think I was in shock and denial of how could this really be happening to my baby. I went through so many emotions in the next few days because the doctor gave me two different options. The first option was to terminate my pregnancy and the second is to carry the baby until nature takes it's course. I have decided to carry my little angel until God won't let me any longer. I have had an appointment with the Nicu's neonatologists, and they confirmed with my doctor and the specialist about the baby's diagnosis. I was informed the my baby's life expectancy is maybe 1 week. Trisomy babies have multiple birth defects, and our baby has a cleft lip and palate. She still has a strong heartbeat, so the doctors have told me I will most likely have a live birth. 80% of trimsomy babies don't make it to full term, and of the 20% who make it to birth...85% of those babies will live the first month. Trisomy babies are 1 in 10,000 births. It happens when the egg and sperm meet and the cell doesn't fuse together to make a complete cell, and there is an extra chromosome.
I keep thinking is it something I did or that I could've prevented, but the doctors reassured me this does not happen everyday, and there was nothing I could've done to prevent it. After many sleepless nights I have come to peace with my decision to carry my baby to full term. I am nervous for weeks to come, but I have such a great support system with my husband, family, and friends. I would not be able to be as strong as I have been these past few weeks without my great family and friends. I look forward to sharing my journey with you. Although this may not be easy this may be one way I can celebrate my baby's life. I have met some great people who are in the same situation, and my thoughts and prayers go out to all of them. I have an ultrasound appointment coming up in the beginning of August. I will try to update the blog around that time.