Ethan Nikolas de Leon

Today marks the one year anniversary of Ethan's passing. In the past year I've learned lot about myself and the strength of my faith in God. I've dreaded and welcomed this day. Although I want to "close" the "grieving chapter" of my life, I didn't want to stop feeling sad. Having Niki has not taken away the pain of losing Ethan and it's hard for me to "let go". I am slowly forcing myself to "find closure" because I know Ethan would have wanted it that way. But...


I still miss him EVERY DAY.
I still wish he could be with us EVERY DAY.
And EVERY DAY my heart hurts for what wasn't meant to be.


However, it is time for me to stop feeling sad about "my loss" and start looking for happiness in the time I did have with him, "my gain". I am fortunate for the lessons Ethan has taught me. I am fortunate that God blessed me with Ethan even though he was only on loan. My "borrowed angel" served his purpose in the week he was on this earth. He educated medical professionals, strengthened my bond with John, brang me closer to my God, taught his brothers about compassion, helped his sister live, and inspired soooo many people to save lives.


My baby has made a bigger difference in one week than some do in an entire lifetime. John and I are so blessed that Ethan was chosen to be son and I wouldn't wish to have it any other way. The past year has been a rollercoaster of emotion, but it was a rollercoaster worth riding. God loved me enough to teach me valuable life lessons at an early age. I miss Ethan. I will always miss him. But...I am so BLESSED for having him. I realize this and I'm okay with it.

I thank God everyday for everything He has given and taken away.

FVII Deficiency...

The primary complication of FVII deficiency is an increased bleeding tendency. Because clotting occurs slowly due to the absence of adequate Factor VII, people with FVII deficiency may experience more frequent and longer bleeding than people who do not have FVII deficiency. The severity of a person's FVII deficiency affects where, how often, and how long he or she bleeds.

Bleeding may result from an injury or may be spontaneous. Excessive bleeding may also occur during menstruation and invasive procedures, such as surgery.

For people with FVII deficiency, bleeds may be experienced in the following parts of the body:

Nose
Gums

Intestines
Joints
Muscles or other body tissues
Central nervous system (the brain or the spine)

It's important for family and friends to fully understand Niki's condition. She is not fragile, but there are certain precautions we need to take to keep her safe. Niki can still live a normal life and I want to be 100% sure that you all know this. We just have to treat her like a lady, that's all.

I got the information above from her factor manufacturer's website. John and I will be giving Niki factor on a daily basis to PREVENT major bleeds from occuring. Thankfully, she did not have a head bleed during my delivery. She may still suffer the occassional bleed, but her factor dosages should help keep her FVII level in check.  So to clear up the confusion...she is not going to have the same fate as Ethan nor does she have brain damage. She is a normal, sweet baby girl who happens to have very special blood. :-)

P.S. Her surgery went fantastic. NO BLEEDS! We hope to bring her home in a few weeks. Thank you all for your prayers.

One Year Later...

Ethan's 1st Birthday has finally come. It has officially been one year since God blessed us with our first unique miracle.

Time flies doesn't it?

I wish I could have celebrated his special day differently, but I felt his presence with me all day. I missed him terribly today, but I also started my morning with a new sense of strength and peace.

I think I'm finally starting to get used to the "new life" I must lead and...I'm okay with it. It was Ethan's birthday, but he's the one who gave me the gift. My baby has given me hope.

I am so blessed to be his mother.

Prayer Requests

I firmly believe in the power of prayer....
Ethan's birthday is tomorrow, Friday Feb 20th. Please keep this special day in your thoughts.
Niki will possibly have surgery tomorrow or over the weekend. Please pray for her speedy and safe recovery.
The hematologists will be fine tuning her medication over the coming weeks. Please pray that they find a dose that works for her so we can take her home.
Please pray that Niki stays BLEED FREE.
Lastly, pray for our strength in the coming days, weeks, months and years.
Thank you.

The Queen Has Arrived...

Name: Annika Nikole de Leon
Date: Monday, February 16, 2009 - President's Day
Time: 5:54am
Weight: 7lbs, 1 oz
Length: 20 inches
Head: 14 inches
Features: She's cuter than the cutest button in the universe! She has Boo's lips and eyelashes, Kevin's hairline and nose, & Ethan's eyes and chubby cheeks. :-)

We refer to Niki  as"The Queen" because she is very special and isn't like all the other princesses. :-) God created her to be just as rare as Ethan...1 out of 500,000 to be exact. Annika is FVII Deficient (Factor 7 Deficient) and will live a very unique lifestyle. She may have a "deficiency", but she will be treated like royalty ALL THE TIME.

The severity of her deficiency is almost identical to Ethan's decificency which means she must always be handled with care. I will share more details as the days move forward. In the meantime, I just wanted to share how ecstatic John and I are to finally meet our baby girl. She is very healthy, strong, and is here to stay. :-)

Let's all continue to rejoice her safe arrival into this world.

Two more weeks to go...Ethan's birthday is almost here.

I'm starting to feel sorrow close in on my heart as the days draw nearer to February 20th. I've missed Ethan terribly these past few days. I feel the same ache I felt when I smelled his scent for the first time. My arms are "heavy" with emptiness again.

I just want to hold my boy on his birthday.

I've comforted myself with the idea that celebrating a birthday in heaven is waaaay better than any party John and I would have thrown him. Ethan is lucky ...clouds, angels, and God...what's not to like right?! But still...he's my child and I wanted to see him devour his first birthday cake just like Kev and Boo did.

I had a game plan for my life with my son, ya know? This was one of the silly things I wanted to remember in my old age. There were pictures I wanted to take. Memories I wanted to retain. This was a  moment in time that  wasn't meant to be. I would have NEVER guessed in a million years and...

it hurts.