Tuesday, August 31, 2010

we knew the day would come...

I can tell you everything about the day Sierra was born. It was more than NINE years ago and I still remember what I was wearing, what I did that morning, and the look on the face of the dr. that I had met with and told me I was giving birth...THAT DAY!
It was two months BEFORE Sierra was due and even though I wasn't ready...she needed to be born. I could barely move. My blood pressure was way high and I had Toxemia and preeclampsia. I got in the car with Angel who had gone to my appointment with me and called Paul to tell them that I was going straight to the hospital to be induced.
There was ONE fear....that her lungs wouldn't be fully developed.

The NIGHT Sierra was born, we were grateful that she was fine and that her lungs were fully developed. There were fireworks in the sky because it was the 4th of July. I was holding her and she was awake looking up at me. Even though I knew she probably couldn't see me clearly I honestly felt as if she was scoping me out.

That same night we saw that she was a little yellow. The nurses took her from me to check her out. They put her under the lights because they said she was jaundice. When she was in the bili machine her biliruben levels would go down. When they took her out they would change and go way up high.
She stayed in the hospital for problem for two weeks. The day before she went home a new dr. came in and asked me if anyone in my family had blood issues. I immediately thought of my family and said no. Then DUH...my dh helped make her...I told the dr. that he had a condition called Hereditary Spherocytosis.
I remember her saying, "that's exactly what I thought you would say".
Through out her life she's been in and out of dr. visits over this very condition. One thing we knew would probably happen one day was that they would need to take out her spleen.

well...we think the time has come to consider taking it out.
We know that our blood dies every 120 days. For people with HS it's different. Their blood dies faster...they say about every 50-90 days (everyone is different). The HS specialists today said they think that Sierra's blood is dying about every 15 days!! She does make new blood very quickly but what they have also found is that her body is working to fix things about 15% MORE the normal rate it should be working. She should be exhausted!
They also worry about her getting gallstones. People with HS get this.
If we take out the spleen it will help her a lot. It will probably take away the jaundice. (She may still have some symptoms because she also has Gilberts disease)
her red blood cells won't be killed off so fast like they do now.
She won't have to worry about anemia, gallstones, and other symptoms.
They say that it may even give her more energy and she'll feel a lot better.

The dr. has NOT decided what to do yet. He wants to think about it because even though she has these issues...she's actually quite healthy. Even though she is jaundice she's full of energy. She has not had to get a blood trasfusion yet.
So he says we have time to think about it and he wants to talk to us as a family. We are meeting back with him next month.
Sierra was a little scared but he made her feel a lot better and she told me that she thinks it might help her.
She was so cute. She took on the challenge I gave out today to smile more. I looked at her from the rear view mirror and saw that she looked a little sad. When she looked at me she flashed me a HUGE smile. She then said..."you remember the challenge". It made me smile.
We joked around and sang the rest of the way home.
We are going to pray about what decision we should make.
If you read this whole thing..thanks for "listening".
Suzy West


Robyn Medaglia said...

She is truly a special and peecious little lady! We are blessed to have her in our lives! I am so glad she and Bayleigh have become such great friends and hope they continue that way!

kathy r said...

Well, God bless you all! Such a smart and thoughtful young lady. You can indeed live quite well without your spleen, and it sounds like (in this case), the benefits of having it removed far outweigh the benefits of keeping it. I have always found that praying before a big decision helps give me peace. I will pray for you all as well.

Jennifer said...

Stay strong! She is a cutie!

Anonymous said...

Even though I don't know you that well I've been touched by what you recently posted here. I can't stop crying and will be thinking about you and little Sierra.....It sounds like the benefits for having it removed outweigh the negative of keeping it! God bless you and your family and I will be saying prayers for you.

Scrapamum said...

What a sweetheart you have : ) I hope all goes well.

Chilispice said...

Your family is so lucky to have you, Suzy. I'm glad to have you. Big hugs!

Gina L. said...

Sierra is a truly amazing spirit and we can all learn a little from her courage. I wish you all the best whatever decision happens to be made for her healthy future. May God Bless all of your family with strong spirits and healthy lives. Take care and stay strong.

Lezlye said...

Wow Suzie,
She sounds like one amazing little girl...I will be praying for her and your family.

GottaScrapChick said...

Not an easy decision....my thoughts and prayers are with you all,especially our little Spunky!

Maripi Aldanese said...

Hi Suzy, I will keep all of you in my prayers. The Lord will guide you. Lift up all the problems that Sierra is having to Him.
Give her a big hug from me ...

Take Care
Maria Aldanese

Kas said...

If you continue your wonderful attitude you will all be fine.

Suzy West said...

thanks everyone! We feel really blessed that we have wonderful people like you praying for us!

sarah said...

oh little sierra.... whatever decision you guys decide, you are being watched over from above. :)

keep us posted suzy.