Tuesday, December 26, 2006

Holiday Pictures

Merry Christmas and Happy holidays to everyone. I've got lots of great holiday pictures and more for your enjoyment! Our little baby has come a long way. It was so nice to be home with her this year, rather than spend Christmas in the NICU.
Here's the link from last year's Christmas post:
2005 NICU Christmas

Kaitlyn in her Christmas Dress (a very old "European smock dress) trying out her new musical table from Grandma Corinne.

Posted by Picasa Yes, Kaitlyn got to enjoy some of our Christmas dinner. I am going to try "blenderizing" regular foods for Kaitlyn (which I haven't started yet). So her first foray into eating what we are eating....some turkey and sweet potatoes (and breast milk) blended and pushed through her g-tube! Well, she vomited, but I guess that's nothing new! This picture is Prior to dinner

This Christmas my brother Gary flew up from LA (he recently really hurt is back, so we were so happy he could come up).
Katilyn not knowing what to think about the upcoming "meal" she's going to get through her g-tube.
A better view of our Christmas feast (prepared soley by Brian after he got off work, working on Christmas Eve - I sure love being married to a fireman (who can cook!)

Trying out some new presents!
Crawling across the room in her dress.
OK, I wish she were smiling, but we at least captures a different "expression" from our serious girl.
Much more interested in the wrapping paper than the presents, (check out the full laundry basket behind Miss K). The vomit has been very bad the last week.

Gary, Kaitlyn and I went on a walk in our neighborhood to look at a Christmas House on Christmas Eve. Kaitlyn was all bundled up and liking being outdoors.
You can see a bit of the house decorations behind us.
Talking to Brian's family in Pennsylvania on the speakerphone.
My brother Gary, with the "Christmas Pants" These were handed down from my father when he no longer could fit in them. And he's getting "Fluffy" a gag gift that keeps going back and forth between Brian and Gary every year. It's always a contest to make sure the other party isn't expecting Fluffy. This time it was hidden in Gary's stocking!

Some more crawling....She's doing great at crawling and pulling herself up...

Even when it's on Gary's head!

This gift tag was on a present from our friends the "Kermoyans" I have to say she carried around the gift tag for hours, and was upset if you tried to take it away from her! She would always made sure she had ahold of the strings. It was very cute.

Feeding therapy. A lot of times I put food in my mouth and let Kaitlyn grab it. Gary captures some smiles as she was taking the food from my mouth

Sometimes I can get her to open her mouth and take it from my mouth, it's still all a "game" at this point, as she really still isn't eating anything.

Checking out a present (with her feeding tube attached)
Wow, these are fun climb up on!
Caught red handed!
Opening the Kermoyans gift - this one she couldn't contain herself, as it made noises inside the wrapping paper! She was very intruiged.

And, this Christmas card from my dad and step-mom made her giggle (we rarely get giggles). She loved it!

More feeding therapy on a different day. You can see her "feeding station" it's basically all the food I try to give her then end up throwing away. kaitlyn also ends up throwing most of it on the floor, so it's easier to feed her on the table than her high chair, as at least some of it ends up on the table rather than the floor. Drinking some water (with a bit of yogurt) on her chin
This is her "normal"expression when trying to feed her, her lips are glued shut and she's saying "there's no way you are going to get me to open my mouth!"

Kaitlyn's favorite place to stand up - the audio-visual section
One of Kaitlyn's g-tube friends. We were at PT earlier in the week, and Elizabeth came for her appointment. Because we know each other, they got to play a bit first.
Elizabeth and Kaitlyn Elizabeth on the PT swing. Elizabeth is not a preemie but has Turner's Syndrome. I've become good friends with Elizabeth and her mom Sara from SF. Elizabeth's therapist (Monica) and the leader of our g-tube group is behind them.

Kaitlyn in her warm new hat I got at a Christmas Crafts Fair. Very cute!
A few weeks ago, Kaitlyn even drank some water out of a glass when Dad, Kaitlyn and I went out for dinner in the SF after one of K's therapy appointments. (an early dinner treat without any other diners in the restaurant).

OK, the following pictures need some explaining of how special they are to me. Most parents get the experience of their children (no matter how hard the newborn state is) of their children smiling, recognizing them, espeically when first seeing them in the morning. We've never had that experience. Kaitlyn also has slept in our room since she came home from the NICU almost a year ago, as that way we could be closer to her pump and watch her for vomit. Her night-time vomiting started decreasing a few weeks back, so Kaitlyn graduated to her crib and her room finally. Well, about a week ago I was elated to find my standing, SMILING daughter looking elated to see her mom. (she's been standing for a while now), but SMILING, that's another story!!! I quickly ran to get my camera, and she still gave me a few more smiles! Unfortunately, she hasn't done this since. Just one day of smiling recogniztion for mom! Enjoy!!....

A g-tube play date!

A few weeks ago we had a small gathering of a few of our g-tube kiddos from our support group at Tylers house.

This is Tyler, and his Grandparents (my friend's inlaws) who were just leaving. Both Kaitlyn and Tyler are getting fed (note tubing and syringes).

Elizabeth and Kaitlyn
All 3 of our g-tube fed kiddos. Tyler also was not a preemie, he was born with a chromosomal abnormality. His mom's name is Elizabeth. It's a bit confusing, as we have: Tyler (and mom Elizabeth), Elizabeth (and his mom Sara), Kaitlyn Elizabeth (and her mom Liz(Elizabeth))! And even smaller world, a good friend of mine grew up with Tylers dad (even though we met through the hospital). They all weigh about the same, Elizabeth and Kaitlyn are both born in October (but technically Elizabeth is 3 months older than Kaitlyn) and Tyler is about 18 months old. This was a wonderful evening for all of us.
Kaitlyn checking out Elizabeth's toy.

Some older pictures that I wanted to post. Kaitlyn is wearing her Halloween sweatshirt. She had just learned to stand up on her own on the couch. She loves to "read" her picture book on the couch.
One of the ways we were able to get Kaitlyn to smile was by making fish lips. (now I say were able to, is usually whatever smile trick we have up our sleeve wears off after a while). I couldn't capture a smile in these pictures, but I was able to capture Kaitlyn making fish lips back at me!
She's a master fish-lipper!
Posted by Picasa Well, I hope you enjoyed all this pictures!!

Happy New Year to you and your loved ones

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!

Thursday, December 21, 2006

Finally asking for help...Kaitlyn needs milk!


As many of you know, we've been relying on donated breast milk for the last many months, many of Kaitlyn's donors have just heard of our story.... I've never had to ask...

Well, it's come to the point (after a horrible day of vomiting about 8 times today) that I've come to realize that I'm dangerously low on breast milk and need more once again.

Kailtyn takes 36 ounces a day, and at least recently we've been able to successful y(except for the last few days) transition to 50% breast milk and 50% Compleat (which is a liquid real food formula). I've looked into getting milk from the breast milk bank, but at $3/ounce (and my insurance won't cover it), we'd go broke in a hurry.

So, here's my plea...are you a pumping mama, who is drug free and healthy and have an excess of milk that you would like to donate to Kailtyn? We really need a lot, and I know there are those of you out there who have excess (I know I thought I did at one point)...

I'll pay for shipping of course (which isn't cheap).

Remember how much milk I had (picture above)? I pumped for 8 months, never figuring that Kaitlyn would have trouble eating and taking formula, hind-sight is 20-20, right? I thought I had plenty to be able to give her a combination of breast milk and formula until she was a year adjusted (1/4/07). BUT, she's not handling formula very well.

Anyway, thank you should you have extra. You can comment with your contact info on my blog, or you can email me. My email address is on my home page:

Northern Lights, angel wings....

Hi, someone posted this on one of the other boards I belong to, and I thought it was very special.

Posting in honor of Corinne Margaret:
Northern Lights - Angel wings

Tuesday, December 12, 2006

Holiday Pictures and some progress!

Here is a link to view Kaitlyn's holiday pictures!


Christmas 2006 Pictures

We have some GREAT news too!

Hang on to your seat, but Kaitlyn is drinking a bit of water by mouth!!!! I can' tell you how excited this was for me, I cried!! Yes, tears of joy that my daughter is taking a few sips of water (sure makes you think about simple things in life, doesn't it).

She even smiled a few times as I brought her "soft-feeder" to her mouth, she opened up her mouth and pulled it towards her!!!!! Wow!

Kaitlyn also learned to pull herself up to the couch a few days ago, she's now full on crawling all over the house and all she wants to do is stand, stand, stand!

We are hoping that as she stands more the vomit will decrease. I have to say, we've seen a bit of improvement on the vomit too!

So, it's been a great week!