Tuesday, December 26, 2006

Happy Holidays 2006

Here is a copy of my snail mail Christmas Card letter:

Dear Family and Friends,

What a year this has been. Most of you know that I gave birth to our twins 13 weeks early last year on October 4th after my water broke from an amnio when I was 17 weeks pregnant. Corinne Margaret (named for our mothers) weighed 1 pound 13 ounces and Kaitlyn Elizabeth weighed 1 pound 10 ounces. Sadly, our first born, Corinne, spent only a few hours with us, and passed away in my arms. Kaitlyn our miracle daughter spent 127 days (4 months) in the NICU and came home to us on February 9th, 2006.

Kaitlyn had numerous blood transfusions, surgeries and was quite ill during her long stay in the NICU. She was on a ventilator for over 30 days, as she couldn’t breathe on her own. I wasn’t allowed to hold her for 6 weeks after she was born. She has a paralyzed vocal chord as a result of her heart surgery when she was 4 days old. Kaitlyn continues to have severe eating issues and is still 100% fed via a feeding tube, but has just started taking a few sips of water in the last week. She hasn’t tolerated formulas at all, and has been surviving on donated breast milk. I can’t thank enough the moms that have made the incredible sacrifice to donate Kaitlyn their milk. It will likely be years until she learns to eat and can get over her oral aversions. She’s spent every day of her life so far vomiting and doesn’t understand that having things in your mouth is a good thing.

Since we’ve been home, we had well over 200 doctor/therapy appointments and it’s been quite an ordeal on our family. We’ve visited regularly: Eye doctor (she had eye surgery while in the NICU to try to correct retinal detachment), Lung doctor (she has chronic lung disease), Urologist (she has kidney reflux), GI (she has horrible reflux), Feeding specialists (1x a week), her pediatrician, Physical Therapy (1x a week), Early Intervention Specialists (weekly), alternative specialists, Developmental Clinics and assessments, and more that I can’t think of right now. We are so fortunate that Kaitlyn has had incredible medical care and we are so thankful for everyone that has helped our daughter.

We still have a long road to go, but she is doing amazingly well. She was at risk for many disabilities from her extreme prematurity. Kaitlyn now weighs over 17 pounds. She’s just learned to crawl and pull herself up to standing. She is crawling all over the house - a little crooked, but she’s getting around just fine! Kaitlyn only started showing us her amazing smile in October, but is still usually very “serious”. She’s beaten so many odds so far and is really our miracle little girl.

Kaitlyn never ceases to amaze us with her incredible spirit and energy. We feel blessed and touched by our miracle daughter. We know that Corinne is forever looking over and protecting her twin sister. There isn’t a day that goes by that we don’t think of Corinne and she will always have a place in our hearts. The first time Kaitlyn smiled back in October, she rolled her eyes upwards and looked at the ceiling in her room, and I felt an incredibly strong presence of her sister. (Corinne’s ashes are in Kaitlyn’s room as I wanted them to be together.)

I’ve been working as much as I can as a Real Estate Broker (with juggling all of Kaitlyn’s appointments and care). This year I sold about $4.5 Million in Real Estate. Brian continues to work in San Francisco as a fireman, and still isn’t at a permanent station yet. We have been able to manage most of her care on our own, but we’ve had our wonderful nurse Lucy help 2 days a week. Lucy is leaving us at the end of this year.

My experiences over the last year and a half have changed me forever. I feel fortunate that I have met so many other wonderful parents of children in similar situations, both on-line and in person. I couldn’t have gotten through all of this without them, as well as the love and support of our family and friends. I’ve started a local support group for preemie moms, as I wish that support was there for me when we first came home. Preemie parents are so focused on the going home day from the NICU and aren’t prepared for how hard things are once you get home. The California chapter of the March of Dimes asked me recently to come speak to them at their annual conference. You probably know that I blog my story on line: What started out as a way to update friends and family while I was on bedrest has taken on a life of it’s own. It’s absolutely amazing to me, but her blog has reached 63,000 views! She has an amazing fan base all over the world. I truly believe that it’s all of you, my friends and family with all of your collective prayers for Kaitlyn that she is doing so well. Thank you for your continued support and love this last year, we wish you all the best for 2007!


sarah said...

You said it best, Kaitlyn is a miracle. I know that it is hard to carry on after the loss of a child. My son, Logan passed away in May, Like Kaitlyn, his twin, Cooper has defied all the odds. You have been a source of inspiration and strength to me and countless other preemie moms. Thanks for sharing your experiences, and your precious little girl! I am so happy that Kaitlyn has started to reward all of your dedication with her precious smiles.

dancing queen said...
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stephasteph said...

I just want to wish you and you family a very Happy New Year and pray that Kaitlyn can overcome all that is in her way. She is a very determined little girl from what I can tell and let's hope that 2007 will be the one where she smiles constantly and for your sake and hers, the vomiting ends. Merry Christmas and Happy New Year!!!