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Tuesday, February 16, 2010

One Year...

Dear Niki,

Today is your first birthday and I can't get over how much you've overcome in the past year. The last 12 months have been filled with emotion for your Daddy and I -- lots of highs and lows.

The day you were born (President's Day 2/16/09) was one of the happiest and scariest days of my life. To be honest, I did nothing but fear the idea of having another "deficient child" during my entire pregnancy. I was terrified with the idea of you dying from the same disorder that took your brother's life. There was a 25% chance, but there was no way we could find out until you were born. You came into this world quickly (drug free, I might add!) and Daddy and I were ecstatic that our daughter was finally here! You looked so beautiful, baby. My arms were full once more.

Even though your brother cannot be replaced, having you made me feel sane again.

Your Daddy and I marveled at how gorgeous you were, but we also watched for "scary things" like seizures. After all, my pushing you out into this world could have caused a brain bleed if you did indeed have FVII Deficiency. Two hours later our fears were confirmed when the doctor said...

"It appears that you daughter is has severe Factor VII Deficiency."

I felt instant guilt when I heard those words. They whisked you away to the Intensive Care Nursery-- the same ICN that took care of your brother -- where a team of doctors and nurses were waiting to evaluate you. Now that we knew you had a bleeding disorder, they had to act quickly to make sure you didn't have any bleeding in your brain. It was a scary time for your Daddy and I. We had to stay in the recovery room while the doctors examined you. All we could do was cry and mourn the life that lay ahead for you.

We felt terrible that we created another child that would "suffer".

But...luck, God, and Ethan were all on your side that day. The doctors and nurses in the ICN were the same doctors and nurses that took care of Ethan. And, they learned a lot from your brother. Dr. Awesome (who also took care of Ethan) was on-call too! Most importantly the ultrasound confirmed that you did NOT have a brain bleed.

You were in an isolette when we finally got to see you. They had you hooked up to all sorts of wires and IVs. It was a scary, but familiar sight. Despite all of the medical equipment around you, you were absolutely at peace. Your nurses kept commenting on how special you were.

One in a million in fact!

The ICN nurses wouldn't even let you cry because crying hard could cause your brain to bleed. So, you were already a Queen from the start. The ICN nurses carried you all the time! Your Neonatologist, Dr. T even wrote in your chart "handle with extreme care" and "no crying".

You were spoiled from the moment you were born, Little Girl.

Your Daddy and I got over our sadness quickly. We knew you were going to be okay despite your "noble blood". We even joked about how girly you were going to have to be. I told our family that we would simply treat you like fine antique china.

Or beautiful crystal even. :)

The next few weeks of your life consisted of a whirlwind of events. You had a blood transfusion and got your first dose of factor in the San Francisco ICN. So many people came to visit you! When you were two days old you were transported to Oakland Kaiser's NICU. We had to say goodbye to our San Francisco ICN "family" to meet a new set of doctors and nurses. The ambulance company made us sign a waiver in case you were injured from all the bumping around on the ride to Oakland.

You made it in once piece, thank goodness!

The nurses in Oakland were very nice. I cried the first night we had to leave you there. We couldn't stay because there was no room, but eventually we got used to going to Oakland everyday. I was there with you from morning until late at night. Your poor brothers must have missed me, but I knew that you needed me more for the moment.

You had surgery on 2/21/09 for your first Broviac. It was very risky because of your bleeding disorder, but you didn't bleed that much. You looked like you were in so much pain after your surgery, but the next day things were actually starting to look up. You were such a tough little newborn -- you barely needed any pain medication. The NICU had a very special nurse assigned to teach your Daddy and I how to mix your factor and administer it through your Broviac.

In fact, your Daddy was the first one (between the two of us) to administer your factor.

Less than 48 hours later, your Broviac failed. It was a defective catheter so they had to put you in surgery again. This time, they moved the catheter right above your heart. (The first one dangled out of your abdomen.) You were such a trooper, Niki-Face. You had two surgeries in less than a week! I'm sure your little body was sore everywhere, but you were still eating like a champ. You weren't fussy at all and you were only one day post-op!

Your nurses said you were the prettiest baby in the NICU because of your lashes and "Angelina Jolie" lips. (She'll probably be an old lady by the time you can read/understand this letter but trust me, it's a compliment.)

Your Daddy and I started to immerse ourselves into our new "hemo parent lifestyle". We learned how perform dressing changes, mix your factor, and access your Broviac right there in the NICU. It was very different for the both of us, but we got used to it. The first time we did your dressing change it took up almost an hour, but now we can get it done in less than 10 minutes!!

It wasn't as scary as we thought it would be.

Little by little Dr. Awesome weaned you off of NovoSeven, too. You were getting it every couple of hours, then three times a day, then twice a day, but by the time you were ready to be released you only needed your factor once a day. Now you're on it every other day. Who knows, maybe someday you won't need it at all.

You've used over a million dollars of NovoSeven by now, but I say you're worth every penny.

You came home on March 5th -- exactly one day after your brother was buried a year earlier. (3/4/08) It was a such wonderful gift to bring you home. It felt so nice to hold you without being tethered by wires and tubes. There were so many beautiful signs telling us that this was your destiny. Our den had a baby again and she was here to stay!

Watching your grow has taught us a lot about ourselves as parents. We've been though some pretty challenging times with you, Miss Diva. You've made me laugh and cry all in one breath! Everything in this past year has been a beautiful learning experience.

We've changed as a family, too.

Your older brothers know compassion, consideration, and delicacy because of you. They are your protectors and advocates. Boo will kick a kid's a** for you and Kev is always trying to teach you new things. Those boys love you to death. They want to learn how to administer factor and they're always playing with your supplies. They even play "tea party" with you because they know you love it so much. When they grow up I'm sure they'll hate the home video I have, but it's an innocent testament to how much they love you. Don't ever forget that once sibling rivalry starts to kick in.

I have no doubt in my mind that having you as their sister will teach them how to treat a lady.

You are such strong, determined little girl. You'll scream and fight if you want something or if someone is messing with you. I hope that personality trait will stay 'cause your Mama is a emotional weakling. You may be a "bleeder", but you're a tough little cub! You love to dance and play, but you won't go to just anybody. Actually, you're a bit of a tease! Your personality is a lot like your Daddy's -- you're "anti-social" but once you open your heart to someone, you'll love them forever.

You're a daredevil, sensitive sweetheart, and diva all at the same time. You move around so much, but you also seem so cautious. What I enjoy the most about you right now is your affinity for pretty shoes. You always tilt your feet to admire every aspect and angle of your little kicks. Such a girl, but such a treat to buy things for!

Your Daddy spoils you rotten.

It has been one year since you've graced the Earth with your presence and I am so glad that God gave us a child like you. Your brother's death saved your life and you are here today because of him. (And God, of course!) You haven't "suffered" one teeny, tiny bit. There is nothing to feel sorry for.

No matter what lies ahead, always remember how much you've overcome in the first year of your life. There aren't very many one year olds like you. God gives you what He thinks you can handle so don't let anyone ever bring you down. NEVER feel sorry for yourself because you are different. Always appreciate how LUCKY you were to be chosen for the path God has laid out for you. Not too many people are chosen to be extraordinary. I am so lucky to be YOUR Mom.

You are so very special and unique --- not like the other princesses in the land-- but I wouldn't have it any other way.

Happy Birthday, Baby Girl. Here's to sooooo many more to come!


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