Email from Monday, November 9, 2009

Did you know that every year the State of Oklahoma welcomes 50,000 babies? Out of those 50,000 babies 1 is born with Osteogenesis Imperfecta, aka OI. For some reason, we didn't beat the odds, and our Sweet Caroline has OI. We got somewhat lucky that she has OI Type 1. 50% of OI patients have Type 1. Sweet Caroline has brittle bones. When we left the hospital we were told that she had 2 fractures, 1 in her right clavicle, the other in her left humorous (upper arm).However, last Thursday, Web and I took Sweet Caroline to a Pediatric orthopedist and they took x-rays on her whole body. It was a painful experience for both us and the patient! As you can imagine, it was cold for her, plus they kept pulling on her limbs. It was literally the worst experience Web and I have had to face thus far. All 3 of us were bawling. The orthopedist informed us that she had multiple fractures since she was in utero. He informed us that at her age, she was 6 days old, that they couldn't put her in any casts because her bones need to heal and grow. He did let us know that as she got older, there could be surgeries in our future, rods inserted, braces worn, etc. Web and I will deal with that reality when we get to it.Then we were off to the genetics doctor. He looked at her x-rays and told us that they were showing 12 fractures since utero, some were healed, others were healing, some were new. Web and I lost it. What did we do to cause her more breaks? We have been loving and holding her so carefully. The doctor informed us that this was nothing we did while I was pregnant or after we delivered. Luckily we had c-section. I can't imagine how many breaks she would have had if she would have been born naturally. Good news is her skull is fine, spine is fine and ribs are fine. All fractures are in her limbs. Thank goodness her ribs were not fractured, because we could be dealing with punctured lungs. Not that her rib bones can't break, but right now we are ok. The genetics doctor did suggest that we check into the NICU at Children's Hospital in OKC to learn how to care for Sweet Caroline. We have to learn how to dress her, change her, burp her, hold her, put her in a car seat, etc. With her brittle bones, we have to be 200% more careful than an infant w/out OI. We can't just hold her ankles to change her diaper. We have to lift her bottom and hope and pray we don't harm her spine. We can't lift her from her bassinet, we have to avoid any all contact with her spine and ribs. The list goes on and on. Web and I should hear from the genetics counselor today and will get our marching orders on when we check into the NICU. Web and I are scared about going into the NICU, but we will do whatever it takes to care for our Sweet Caroline.The genetics doctor talked to us about another doctor in Bethesda, MD at the National Institute of Health. She works with OI patients and literally has them in the pool at 4 months old! Web and I hope to work with her as Sweet Caroline gets older so we can get her strong. There is no FDA approved medicine for OI in infants and children. They say it could be soon, but soon to doctors could be 2, 10 or 20 years from now. Needless to say, we aren't holding our breath. If you want to read more about OI, a great resource is www.oif.org. If you don't, I do not blame you at all. I can honestly tell you that I have just browsed it. Web and I are reading the material that the doctors gave us right now, which is a lot.

OI is a weird one. If you look at Sweet Caroline, there is no way you would know she has it. She is perfect! She has her daddy's eyes and nose. Her mommy's full lips and long fingers and toes. She is doing what all infants her age should be doing, she is growing, eating and stretching her legs. Unfortunately, when she does that she cries and cries later because it hurts her. I have caught myself pleading to her not to stretch her legs, because I don't want to see her in pain. The doctors tell us that she will eventually learn her limitations.
Web and I are fine, we have had many calls, emails, texts over the weekend, plus a visitor from Dallas! If we haven't returned your calls, etc we are sorry but we are so appreciative of your messages! Not only do we have a child with OI, but have a mommy recovering from surgery, plus the everyday newness of being parents! It's been overwhelming to say the least, but we wouldn't trade her for anything.
She is just beautiful and we probably love her even more now than we did last week.

I am rambling. But those of you that know me well, know that I love to get on my computer and just purge information! Thanks to all our friends that have sent flowers, cards, FOOD. We are so grateful!
I love not having to cook right now! Please continue to pray for Sweet Caroline! She could really use them, and if you can throw one in for Web and myself we would truly appreciate that as well.