the 19th of February...a day to remember

The 19th of February is a date that I am sure I will never let slip from my memory. February 19, 2005 was first significant because it was my original due date with the girls. For months I worked so hard to keep my babies safe inside me. I was on bed rest almost from the beginning, I ate a full meal every two hours with a snack in between, I slept more than I did anything else, and we all lived in constant fear of the babies coming too early. All of that, in the hopes that we would make it somewhere near February 19...the magic day. Obviously, that didn't happen, the girls came 13 weeks early but we were so thankful that they stayed inside of me for as long as they did.

That is only one reason to remember that day, the other is even more symbolic to how our lives our and that is on February 19, 2005, five years ago today, Keyan received her trach. At the time, we were so naive....all we cared about was getting the tube out of her nose and getting her off of the ventilator so that we could hold her easier and she could continue to develop. I will never forget the doctor coming into a meeting that we were having and telling us that she would need a trach. We were not surprised, it sort of seemed like the path that she was on. After the meeting, Paul and I found a secluded family lounge and sat at either end of the couch just staring at each other. I remember posing so many questions to him, both of us crying just a little bit, and than standing up with the resolve that has now become so common and going right back in to her nursery to start learning what we could. We are often asked if the hope is that she will get the trach out someday and my response it always the same. "Well, we were told that she would not need it longer than a year, and here we are five years later! We certainly hope so, but we have certainly learned that only time will tell." It is amazing how you can hate that little piece of plastic so much and yet in the same breath be so thankful for it. Even today, as she recovers from a very serious pneumonia, I have to admit that this round of illness would have been a lot worse had she not had a trach. Five years ago, we started a journey that very few people are on. We have learned things that I really would rather not know, and we have been blessed with the opportunity to care for a fantastic little girl...the pictures say it all!

About 3 days after getting her trach...she was still on a ventilator

A year later, sitting up, clapping, and on oxygen 24/7

The following year, just learning how to walk..no continuous feeds, and oxygen only at night.

A year later, she is blending in with the other girls a little more and insists on having her turn with Daddy!....notice NO tubes! She was on bolous feeds of blended food..we were so hopeful!

Four years old..still using the feeding tube but able to eat a little bit of ice cream every now and again! She had actually just come home from the hospital sporting a PICC line in her arm for some IV antibiotics but that did not stop her!
Tonight, five years later...wow, what a five years it has been! I have tried to write this all day and I can't without crying, so I guess the beauty of the Internet is that I can just sit here and let the tears fall and no one has to know. She is still on oxygen at night and right now even needing it during the day thanks to being sick! She is on IV nutrition 24/7 with a central line near her heart and any food that she does get has to go into her intestines. She has fought so hard over the the last year and we just don't have a lot of answers. It is easy to think that that all we have done is go backwards, but look at her...she is still smiling, talking up a storm, cracking her on jokes, and loving life. There are moments where we feel so discouraged, but than she inspires us on! Won't it be fun to see what the next year brings~