Sunday, September 8, 2013

Friday, June 14, 2013

Grace gets a new necklace, sort of...

Life gets busy and I forget to write but it is about time for an update...

There have been some big changes with Grace. In December we made the difficult decision to put Grace through yet another surgery. Grace had been throwing up a lot of her feeding which was horrible to watch her go through. She would struggle to breathe, lips would turn blue, and then she would end up in the hospital with aspiration pneumonia. We were in the hospital nearly every two weeks, it was time to do something. We met with GI and general surgery and decided on a Nissen, a procedure that would make it so Grace could no longer throw up. General surgery also recommonded having her intestinal malrotation corrected at the same time. All of this was a difficult decision because during Grace's very first surgery, when she was two weeks old, she coded and needed to be ressesitated. We almost lost her. But, we knew this surgery would be good for Grace and would lead to a better quality of life. So the date was set, November 29 2012.

The day of surgery came, they took her back and we waited. About an hour had gone by when the surgeon came to the door and said "We have a problem."  Our hearts dropped. He told us it took three anesthesiologists an hour just to get her breathing tube in. Her airway is so small and her anatomy is so different than a typical kiddo. The surgeon said she was stable, but not stable enough to do surgery. He said the only way he would even consider touching her is if she had a secure airway, a trach. We would have to think about this, as it would be a huge decision. A trach had been brought up before, but I brushed off the idea saying she didn't need one! So he left, letting us know Grace was stable and they would be bringing her up to the PICU with her breathing tube.

About ten minutes had gone by after the doctor left and we heard the Emergency Chimes and they announced "Anesthesia stat to OR 1" I knew this was Graces room! I lost it, I thought we were going to lose her. It seemed like forever until the anesthesiologist came in to talk to us and let us know she was ok. It was horrible. We talked with her a lot about the option of a trach. She told us that if for some reason Grace was to stop breathing and needed to be intabated, she would not make it. It took 3 highly skilled anesthesiologists to place her breathing tube in a highly controlled place (the OR), it would be unlikely they would be able to place a breathing tube in an emergency situation and it would end up that they would have to trach her in an emergency. We knew a tracheostomy had to be done, it would save her life one day.

Grace was taken to the PICU , and her surgery would be on Wednsday, 3 days later. Her initial surgery, the reason we were there in the first place, would not happen. I spent all of my time up until the day of surgery on Facebook groups for Moms of Trach Babies. I asked questions and tried to learn as much as I could to prepare for a hole being cut into my babies neck.  I spent hours staring at my baby girl in the hospital bed with a breathing tube, looking at her sweet neck and kissing it. We spent hours talking to every doctor, nurse, and respritory thrapist in the PICU that knew Grace so well, looking for reassurance that this was the right decision for her.  We knew this is what had to be done.

The day of surgery came, it would be a fast surgery only about an hour. The anestisiologist spent hours with us, the same amazing lady that had been in the OR with Grace just a few days before. She had been up to visit Grace everyday. She changed her schedule around to be in the OR with Grace. She knew how terrified we were. She had the nurses call us during every step of the surgery so we knew what was happening. Everything went as planned and Grace was back up in her PICU room looking peaceful. Grace was a champ and she healed over the next week. We decided this was enough excitement for one hospital stay, and we would wait until summer to have Grace's Nissen and Malrotation surgery.

A couple days after Grace's Trach was placed, the PICU Nurse Practitioner came into her room.  She told us that she was up all night thinking about Grace and in her opinion it would be good to get her Nissen and Malrotation surgery done while she was already in the hospital.  After talking to her we made the decision to go ahead with the surgery. Three days later, Grace again went down for surgery, this time to fix her Malrotation and to do the Nissen. This surgery was much longer, but when it was all over, everything had gone smoothly. Grace recovered from both surgeries like a champ!!

Before we could take Grace home we had to go through a lot a training on how to take care of her now that she had a trach. It was scary, but we learned quickly! We were determined to get home by Christmas. And we did, we finally came home four days before!! 
So many new machines, she needs a bigger room!
Finally in her own bed!!

With a trach comes nursing care, something that we had been trying to get since Grace was two months old. We finally have help, during the day and at night!! Gracie's nurses have been amazing. They help get her ready for school in the morning, go to school with her, and take care of her while Beau and I are working. At night Beau and I finally get to sleep, unless Brady decides to wake up. 
Brady missed his big sister!

Placing a trach was one of the most difficult decisions that we have had to make for Grace, but we have no regrets, not one, except for we wish we would have done it sooner. It has changed her life so much, in so many great ways!! Before the trach, Grace was in and out of the hospital nearly every two weeks. Even just a cold made breathing more difficult for her. Dare I say it...6 month later, and we have not been in the hospital except for check ups and to visit the great doctors in the PICU!! Grace is happier, and sleeping better too!! It has been amazing. 
So happy!!

Thanks for alway supporting us and for all of your prayers for Grace!!

Saturday, July 30, 2011

We Are Very Blessed!

There are a lot of new things happening in Grace's life since I have written last!

In January, Gracie's Ride became a reality! After a very successful benefit, put on by our amazing family and friends Grace got her new van.  I don't know how we got Grace from place to place before this van! It is absolutely amazing. It is so easy to buckle Grace's wheelchair down and be on our way.  Grace loves her new van as much as we do.  She used to hate riding in the car, but now she is more comfortable and happy when riding in the van.  She actually smiles and gets so excited when she knows that we are going somewhere! We are forever grateful to all that helped make this dream a reality!

Grace on her way in the van

In January, after a battle with our insurance company, we were able to get Grace a very special bed.  It is called a SleepSafe bed.  It is fully electric, so that we can easily raise and lower her for dressing and diaper changing.  The head of the bed also elevates to help ease Grace's reflux at night.  Mommy and Daddy can also crawl in to cuddle and help Grace fall asleep.  It is awesome!  Grace thinks she is a big shot in her new bed!

All cozy

Such a big girl in her new bed

The biggest change will happen in August, Grace is going to be a big sister.  We found out in February that Grace will be a big sister to a healthy baby boy named, Brady.  We have been reading her books about becoming a big sister, and she smiles when we talk about her brother.  It will be a big change, but we think Grace and Brady will be the best of friends! 
I'm Going to be a BIG SISTER!

My brother, Brady

Daddy reads me a book about my Baby Brother

Another big change is that in February we moved into a new home! We love that it is a ranch style, with no steps!  Everything is very open, so it is much better for Grace.  It is also in McFarland, where I teach and where Grace will start Early Childhood!

And that brings us to a big change happening in September...Grace will turn 3 and that means she will be starting Early Childhood!  The best thing about Grace going to school here in McFarland is that my school is right next door...just a few steps away.  I know all of the staff that will be working with her, which makes sending her off to school just a little bit easier.  We met with the school and all of the people that will be working with Grace.  We had her IEP, and some great goals were set for Grace to work on this school year.  She will go to school in the mornings for three hours.  Beau will drop her off and she will take the bus home...yes that is right my baby girl is taking the bus! I think she will really like her new school and making new friends!

The other blessing that has taken place recently is that we found out that Grace would qualify for some Home Health Care services.  We now have a college student, who is wonderful with Grace, coming into our home 4 days a week, for 3 hours each day.  She helps will all of Grace's care, therapy, and feedings. It gives Beau and I some time to get things done and run errands too.  We are so grateful for this time!

Grace's health has been stable and her kidneys have actually improved just a little bit.  We continue to pray that Grace stays healthy and makes strides each day.  She has been such a happy sweet girl and gives her mommy and daddy lots of laughs and smiles!  She is so much fun and we are looking forward to seeing Grace and Brady together soon!

At the zoo with mommy and daddy

Getting to be such a big girl. So pretty!

Thursday, December 30, 2010

Gracie's Ride

Gracie's Ride began because friends and family saw how hard it was for us to take Grace from place to place in our SUV. In order to take a trip anywhere we had to first load the car with Grace's Wheelchair, feeding pump, suction, and diaper bag. Then put Grace into her car seat, and off we go. Then when we get to where we need to be, we unload it all. It is truly exhausting going anywhere.

So the idea of getting a wheelchair accessible van for Grace came into our minds. After looking into it, and finding out how expensive it would be to get a van with a wheelchair lift, we let the idea go, because it was something we could never afford. This is where the idea for "Gracie's Ride" began.

The planning began about a year before the event. Many of our family and friends spent many hours planning this very special event for our family.  We couldn't believe the support from everyone, even people that had never met our family! It was all very overwhelming.  We can never thank all that were involved enough!

The day of the event came and oh my gosh, it was bigger than we could have ever imagined! Walking into the benefit for the first time, so many feelings rushed over us...I could only cry. All of the support and love for Grace...she has truly brought so many people together! There were over 300 things donated for the silent auction, tons of food,  and great entertainment.  Grace was a trooper, she stayed the whole time, just loving all the people and music.

In the end, we were able to purchase our van and we are now just waiting to get the call that it is ready for us to pick up. I can only imagine how much easier this is going to make our lives. We are so excited and grateful to you all!

We all wore Gracie's Team Shirts, pink of course!

The girl scouts helped in the kids corner, they make Grace her own vest!

A very special wagon donated to Grace!

Grace spent the night in the rocking chair

Daddy, Grandma, and Grace
Look at all the people who love us!

Thursday, September 30, 2010

Grace turns 2!!!

I am not sure where the time has gone, but our baby turned 2 on September 7th!!!  This year was a much happier celebration for me, not sure why...maybe I am getting used to the idea that Grace isn't the average 2 year old. No that is not it...I will never get used to that. Birthdays bring the reminders of the milestones children reach. Two means, running, talking, causing trouble....but for Grace it means another year of challenges, but we are so grateful for another year! It is hard knowing all that Grace has to go through! I just try not to think about all the challenges, and concentrate on the happy things, and there are a lot of happy things! Grace has made amazing progress this year, and I just look forward to what comes next.  Anyway, she was so happy on her birthday! She knew it was a special day. All giggles and smiles this year! We celebrated by having a small party for her. She enjoyed opening her presents and playing with them. The frosting on the cake was good too! She loved looking at her candles and listening to everyone singing to her. It was a priceless day! Happy 2nd birthday to our Amazing little lady! We love you so much Grace!
So Happy to be 2!

Jambos from Mommy and Daddy

I LOVE Elmo!

My first Cake

All my cousins were at my party too!!!

Me and Grandma Great

Friday, July 30, 2010

Grace Rolls Over

Summer Update

Well, I would say it is about time I updated! It has been a fun but very busy summer! I have really enjoyed being home with Grace this summer. She is getting so big and changes everyday.

Doctors and More Doctors:
So we took Grace to the eye doctor and found out that she has good eye sight. Normal for her age...and let me tell you, not many doctors ever use the word normal when they talk about Grace. But what is normal anyway :)! It was still good to hear. We also made our way to the kidney clinic, which is alway scary because Grace always has to get blood work and a urine sample (they use a catheter, not fun). Neither went well, as they could not get the blood from her. They tried both arms while she screamed and looked at her mom for was a horrible day. We had to go back the following week and they finally got her blood in the first try. The good news is that Grace's blood work showed that her numbers for her kidney function are still stable, which means no transplant for now, we just hope they stay stable for a long time!  The kidney doctor is a little worried about her growth pattern. They feel that her growth has slowed down and that she is small for her age. This may be due to Emanuel Syndrome, but can also be linked to renal failure. So she may set up an appointment with Endocrine, which could lead to giving Grace hormone shots daily (we are saying lots of prayers that we don't have to go down that path!)  We also saw the orthopedic doctor and found out that Grace's left hip is dislocated and her right hip is also nearly out. It amazes me that she is not in any pain with this and that she still kicks her legs.  After talking with the orthopedic surgeon, we have decided to leave them surgery for her. Grace doesn't tolerate surgery well so it is really the last thing that we would want to do. So for now they will just keep a close eye on her hips. The doctor made us feel better about this when he told us that people with dislocated hips can still do everything that anyone else can do...but it may take longer. We are used to that, so for now, no big deal.  Grace had a great visit to her genetic doctor. We have known him ever since we found out that would be born with Emanuel Syndrome. He has been there through it all! He was so pleased with how well she is doing. His words "There were many times that we didn't think she would make it. She has come so far." It is always good to see him.

Some Awesome Firsts!
The first week of summer Grace learned to roll from her side to her back! It was a very exciting moment.
Grace also had her first haircut...which only took about 5 minutes, but was very fun for us!

Sitting Pretty
Beautiful girl!
She also has been very busy teething, which is not fun for anyone. She now has three teeth. Two on the bottom and the newest one on top! Yeah Grace!

FUN this Summer:
Grace's favorite thing by far this summer has been going up to my parent's place on the lake. She loves to watch the trees and enjoys swimming in the lake and the pool! Mommy bought her bubbles and she loves watching them. You can tell she is spoiled because now she has about 2 gallons of bubbles!
Happy 4th of July
Swimming in my pool
Uncle Jared, Cousin Mac, and Grace
Grace and Grandpa John at the lake

The summer is far from over and I am sure we will have many more fun adventures!