Long overdue post!

So much has happened with our family that I don't even know where to begin. All I know is that we have had many changes the last year with Belly and our family. Bella currently is still taking 6 pills a day for her seizures, she has to be cathed 4 times a day, takes meds for her bladder and also a daily antibiotic to help keep the UTI's away. She still gets physical therapy 2 times a week and occupational therapy once a week, along with the therpay we do with her at home. She has her braces and we are working on her crawling so it becomes more of a 4 point crawl, and we are in the process of getting her a stander and possibly a wheelchair in the near future. She still goes to the spina bifida clinic several times a year in Denver and also goes there probably once a month for specialized appointments and procedures. Even though it is busy taking care of her we wouldn't change a thing. Our life is what it is and it cannot be changed, nor would we want it any different. Bella is who she is because of all the challenges in her life that she has overcome and what she will overcome in the future.








Our family had an awesome opportunity this past week to go to California and attend the National Spina Bifida Conference which was held at the Disneyland hotel. We were able to meet a lot of families who are going through the same things we are and also talk with older children and adults with this condition. While at times it got overwhelming seeing all the wheelchairs and walkers it was a good eye opener on what to expect in the future. There were so many classes being offered that we weren't able to attend them all. We received great information from leading specialists around the nation. We also met some amazing kids and parents. The conference lasted 3 days, we then spent an extra 4 days going to Disneyland, Six Flags, and Universal Studios with our family. It was a great vacation and we built some memories that will last a lifetime.

I can't believe Isabella will be 4 months old tomorrow! Where does the time go? I haven't been very good about keeping people updated on caring bridge or this site for that matter. However, these last couple months there really isn't much to update after the whirlwind of surgeries are over. Thank goodness! Isabella is the biggest joy to our family! She has taught me more about life in these past few months than I have learned over the past 30 years. She has taught me how to love more than I ever thought possible, the virtue of patience, resiliency and most importantly I have learned who really is in charge - and it isn't me! While she is a lot of work, I wouldn't change it for anything. Our weeks are sometimes full of doctor appointments and ultrasounds and following up with specialists at times. We go to Denver every 3 months to the spina bifida clinic where she meets with the team of doctors that will follow her throughout her life. They consist of her urologist/gastroenterologist, orthopedic doctor, physical therapist, neurologist, and neurosurgeon. She has PT twice a week and OT once a week. We also have to do stretches and exercises on her hips, knees, and feet since she doesn't move or feel her legs from her knees down. She is currently wearing a brace on her right leg and pretty soon they will be addressing her left leg too. I also thought I would share a neat poem I found on a friend's blog.

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

My Montage 12/23/09 at OneTrueMedia.com

As most of you know, my water broke 4 weeks early and Isabella was born on December 2, 2009. Here is a video of the first few weeks of her life.

Photo and video editing at www.OneTrueMedia.com

Letter to Isabella

Dear Isabella,
Thanksgiving has come and gone and I'm still pregnant with you! I can't tell you how happy that makes me! We have a little under a month before your arrival and we are so excited to meet you. I am going to cherish these last few weeks being pregnant with you, for I know you are getting that much stronger and healthier before your arrival. I just thought I would tell you a little bit about your family before you get here.
Your dad is already very protective of you and has been taking very good care of me. You are going to be so lucky to have him as your father.

Your two oldest sisters, Hayley and Sydney, give you hugs and kisses before they go to bed every night. They can't wait to take care of you when you get here. And your other sister, Avery, is only 2 years old. I am not sure if she completely understands what is going on but she sure loves to kiss and hug my belly. She is always saying "Baby 'Bella' " and coming up to look at my belly. She even informed me the other day that she is going to bathe baby. (Don't worry we will only let her "help"). As I end this letter to you I just want you to know how much I already love you. I feel very lucky to be pregnant with you and can already tell you are a very special little girl!

Isabella Update

I am not very good at updating my blog, as you can tell it's been two months since my last post. A lot has happened since then. We have had two appointments in Denver with specialists, along with my regular OB appointments with my doctor here in Gillette. In September we had another ultrasound that showed Isabella now has hydrocephalus, which is water in/around the brain. We weren't completely surprised with this finding, since about 80% of babies with Spina Bifida develop this condition, but we were disappointed. We also met with the pediatric neurosurgeon that will be taking care of our baby when she was born. We really felt comfortable with her and she answered a lot of our questions on what to expect once Isabella is born.

Last week we had another ultrasound in Denver, which showed that Isabella is growing as expected and nothing else has changed. Which is such a relief we didn't get any other upsetting news. We also scheduled my c-section date. This will take place on December 22nd, and Isabella will go into surgery on the 23rd. The only purpose of this surgery is to prevent infection by closing the opening of her spine, it will not fix or correct any damage that has already been done. She may or may not need shunts in her brain to drain the excess fluid. We will just have to wait and see what happens after she is born. Unfortunately, from here on out it will be a waiting game with our baby. We won't know until she gets older what her functioning will be like (ie. level of paralyzation, walking, bowel/bladder function, etc.).
I have also been on bedrest for the past 3 weeks since I went into preterm labor at 31 weeks. I was in the hospital for several days on IV fluids to stop contractiongs. It has definitely been hard but I know it is worth every minute of it. She doesn't need to be preterm on top of all the other problems she will have when she is born.
I feel so blessed that we are getting the opportunity to raise this precious little miracle. I still have periods of "why me" but not as often as I did at the beginning. I know she isn't an accident and is being given to our family for a reason. She is going to bless our lives beyond our level of imagination right now, along with the other people that are privileged to be around and know her. I can't wait to hold this beautiful baby girl!

On August 27, 2009 I went to what I thought was going to be a normal, routine ultrasound. I have experienced these with my other 3 daughters and wasn't expecting anything out of the ordinary. I noticed during my ultrasound that my doctor was being more serious than normal but I wasn't too concerned and just thought she was concentrating on getting measurements. Then she told me that she noticed some abnormalities and was concerned that our baby girl had spina bifida. I was in complete shock and my eyes filled with tears and was hoping it was some sort of mistake. I called Harvey from my cellphone and broke the news to him. The next day we went to Denver to see a specialist that confirmed that our unborn baby did indeed have spina bifida.

We go to Denver again on September 24th to get more ultrasound pictures that we will then take to the pediatric neurosurgeon. Hopefully after these next appointments we will have a better idea of what to expect when she is born. We have many questions to take to these doctors.

I have shed many tears and spent many hours on my knees praying for the best outcome for our Isabella Grace. I know the Lord only gives us what we can handle and for some reason He is trusting us with this precious little girl to take care of. I know she will be a blessing to our family and we will only grow stronger through it all.