Babies must be tone deaf....

OK, Brian will probably never forgive me for posting this, but hey, he rarely reads my blog anyway....Enjoy!

The link below is for a video of Dad (aka - Brian) singing to Kaitlyn!

She had just leanred to stand on her own (on the couch), this was taken the day after Thanksgiving.

Click here for video

Some great products for preemies and Children with Special Needs

I may have mentioned in the past that my mom is a Board Member for a great Pediatric organization in Southern California. We were lucky enough to be able to take Kaitlyn there while we were in LA last month for an evaluation. We got a great musical CD for children that have developmental challenges (like Kaitlyn).




This CD is so great, I wanted to let you know about it and how to order it. Kaitlyn loves it! It gives instructions for every song of what movements to make and the words to the songs. Great for those musically c hallenged like me! Additionally, PTN (Pediatric Therapy Network) has other products/books that my fellow preemie friends might be interested in.
Here is their main website:
Pediatric Therapy Network

Here is a list of all of their products:
PTN Shopping

And here is the link to the Music CD I mentioned:

A celebrated winner of the coveted Parents' Choice Award, The National Parenting Center's 2006 Seal of Approval and an iParenting Media Award, this music CD was created by Pediatric Therapy Network and Joe Rothstein, a speech-language pathologist and musician. Toddlers and young children will love listening and learning with these engaging songs to nurture coordination, speech, sensory processing and social skills. The accompanying booklet is filled with exciting ideas and resources for parents and children to have fun together with music. Learn how to enhance social skills, language and motor development through music and movement. Get ready to sing, dance and move around! Link for CD details

November pictures 7

And to finish off everything, I thought this was a funny picture. Kaitlyn attached to her feeding pump, in her new crawling position, leaning over her bowl (which is a toy). But I've certainly used this bowl in a pinch to try to catch vomit. She's not actually vomiting in this picture, but it's funny none-the-less! 

November pictures 6

Her PT (Cindy) is sooo pleased at how well she's doing. She really didn't expect Kaitlyn to crawl until she was 12 months actual! Our miracle little Miss Kaitlyn is surprising everyone, she is now not even commando crawling anymore, she's on her hands an knees. She's still dragging one of her legs though. Kaitlyn likes Cindy a lot, can you tell! I hear of stories of babies hating PT, Kaitlyn doesn't seem to mind it much!


Working on her balance with Cindy.
Her PT appointment was in SF, the Golden Gate bridge and San Franciso were so beautiful when I drove home that I stopped to snap a quick picture.

It had just rained the day before so it was crystal clear outside.

November pictures 5

My friend Sean and has partner David gave us this back-pack not long after Kaitlyn came home from the NICU. She's finally big enough to use it. We took the opportunity 2 weekends ago to go on a little hike with some nice weather! We are now having a very, very cold snap. It was in the 20's last night! Not a big deal for many of you in winter, but this is California! I had frost on my car this morning.

I had to try out the pack too! Kaitlyn didn't seem to excited, (then again, that's just her usual expression!).
This is my only Thanksgiving picture of Kaitlyn. Brian worked on Thanksgiving and of course my little girl doesn't eat much (well nothing actually). I guess that's the life of a wife of a fireman. We had 3 wonderful invitations to join friends, we ended up eating at another fireman families house who live in our neighborhood. This was Kaitlyn all dressed up on our way out the door. Birthday outfit curtesy of Sue (gorgeous sweater) and Dina (Kylers mom).


I don't think I've ever taken one before, but this is a picture of Kaitlyn's nurse who comes twice a week. It's been a very hard time lately, as Lucy (K's nurse) has told has that starting the first of the year she won't be able to come any more! We are a bit desperate for help! Lucy is a retired NICU nurse and treats Kaitlyn like her granddaughter! We are going to miss Lucy! Kaitlyn still has physical therapy 2x a month.

November pictures 4

Big girl Kaitlyn still is tough to catch a smile...she loves taking a bath.


Dad is the best at making Kaitlyn smile, and I was there trying to capture a few. It's still tough, she's still not much of a smiler, but at least we get a few every day now! That's a big deal for our serious one who didn't smile for 11 months!!
Showing off her 2 bottom teeth! She actually is cutting her top 2 teeth now, they are just peeking out.
Another fleeting smile with dad 

November Pictures 3

Grandma was so happy to have Kaitlyn at her house that before we left the following day, she paraded up and down the street with her "baby."!

My mom working on "feeding therapy" with Kaitlyn on the floor. K is very good at throwing everything off the tray rather than putting anything in her mouth. My friend Kim at her beautiful wedding!

This is how Kaitlyn sleeps. I have to giggle when I see her like this. She looks like a Russian dancer or something! She's slept with her head back for as long as we can remember. She's a definite side sleeper, like her mom.

November Pictures 2

While we were in LA, we had to stop by the cell phone store (as brian's phone was on the blitz). It was actually funny (in our vomit type of way) as Kaitlyn had 2 huge vomits while we were at the story. The poor sales guy went running! We actually giggled, as what else can you do when your child (who was feeding at the time) vomits 3 x all over herself, her car seat, and of course it was typical projectile vomit all on the store's floor. This picture was taken afterward. She's wearing a very cute birthday outfit from a local twinless twin mom and her surviving twin Kyler.

Sue, a high school friend of mine who is a twin mom!

We were in LA to attend a good friend's wedding. Brian and I actually went out on our 2nd ever "date night" (If you don't include our vacation away). Grandma and Uncle Gary watched Kaitlyn after some lessons with the feeding tube. This cute birthday outfit on Kaitlyn was from my good friend Keri!

Grandma in the picture too, this view is from my mom's deck, looking out at LA in the background.

November Pictures 1

Then the weekend after we (Brian, Kaitlyn and I) all drove to LA for our FIRST trip! It felt very strange for me drive anywhere, as I haven't been on a road trip since I was pregnant. That was a long time ago, strange for me, as I used to go on road-trips all the time. Boy has my life changed. This picture was in LA, right as we arrived at my mom's house. Uncle Gary was so happy to see Kaitlyn!

And so was Grandma Corinne! (remember, Kaitlyn's sister was named after my mom)
Happy Grandma!!

My mom volunteers for an organization in LA called the Pediatric Therapy Network (this was way before I had my twins) and she donated a tile on behalf of Kaitlyn's sister Corinne. You can see Corinne's Memory tile next to Kaitlyn.

Lots of new Pics

I'm having MAJOR picture posting issues. so bear with me....

I'm sorry it's been so long since my last post, my new "crawler" has been making life very hard. Motor Skills wise, Kaitlyn is doing really, but it's gotten to incredibly hard to feed her, so we are doing trial and error changes to her feeding schedule.

Today I was asked to present to the California Chapter of March of Dimes. They asked me to drive up to Napa to speak to the California employees about my story and what march of Dimes can do to better support us! I said communication! I want to help new Bay Area NICU families, but it's hard to get the word out that I'm here to help!

Kaitlyn loves to help me work on my blog!

Yes, she's quite a typist!

My dad came to town and got to see his granddaughter!

I hope you enjoyed the pictures! Looking back as I post these pictures it's hard to believe I had days like I did yesterday. My life is hard. Sometimes I get really down. I tried to go jogging yesterday, but I couldn't make it far as I stopped and cried. I don't mean to end on a down note, but sometimes it all gets to me.

And then to top of that day, I had a HORRIBLE nanny thing happen. I'm not sure if I can even write about it here and now - it's too horrible. I'll save it for another post. (Remember I said our nurse was leaving, I've been trying to find someone that I can afford, as I can't seem to find a "nurse" that the agency will cover.

Kaitlyn and her Plantitos

Kaitlyn Crawling video

Photo Montage from "Jenny"

I have a regular blog visitor, Jenny in Washington. Jenny is 14 years old and made Kaitlyn a photo montage:

Click here to watch

Make sure you watch until the end, as you'll hear Jenny talking live. She actually videotaped this on her computer.

Lots to report!!

There is so much to report I don’t know where to begin:

Kaitlyn's 2nd Halloween

This should really be Kaitlyn's first Halloween, but she did grace us with her presence October 4th, so this year was actually her 2nd Halloween.

Here are pictures of Kaitlyn last year on her first Halloween in the NICU, weighing less than 2 pounds:

Mom's hand





Dad wearing Kaitlyn's Halloween Hat

We attended our NICU reunion Halloween party last weekend. Kaitlyn was a Princess – I wish I had more time to do something funny and cute for her costume. First we went and visited a pumpkin patch near our house (in that it was a few days before Halloween the choice of pumpkins was slim – but we were going for some photo op time anyways).

She almost looks chubby doesn't she (it's just the fluffy dress)

At the NICU we saw many of K’s doctors and nurses, here are a picture of 2 of her nurses (One with Auntie Rosa who was there when our girls where born, and if you remember even came to stay with me for a few nights after Kaitlyn’s G-tube was inserted when Brian’s Grandfather died). She was so happy to see Kaitlyn!


Nurse Rosa

Nurse Mary


Proud Papa and his Princess


This picture is of Angus. Angus and Kaitlyn weren’t in the NICU at the same time, but Angus mom has been graciously donating me a ton of her breast milk. This is Angus’ dad.

Mom and Dad and Kaitlyn are all sick
It’s our fault. Brian and I both got sick at about the same exact time last Sunday, and then yesterday Kaitlyn came down with our cold. This is the 2nd time K and I have been sick in the last month! Both times I’ve given it to her. I feel horrible (for giving it to her and from being sick). Her sick little eyes, running nose, fever and cough – it breaks my heart!

Kaitlyn started on Synigis shots
If you remember last winter Kaitlyn got monthly shots of Synigis shots. These are VERY expensive shots to help fight RSV. Because Kaitlyn was so small, has lung disease she is at risk for RSV, which could easily put her in the hospital. She was approved again to get the shots this winter (They run well over $1,500 each!) She’ll get the shot once a month through April. This year however, they were able to send the shots directly to our house as we have an RN that comes 2x a week. She got her first dose yesterday. Poor baby, she had a terrible day, being sick and a shot! The doc still wanted to give her the shot even with being sick, in case this should turn into RSV. Most kids get RSV, but a kid with normal healthy lungs it’s not much more than the common cold.

Kaitlyn’s crawling!

Well not entirely, but she can go a pace or two before her right arm seems to get left behind. I spoke to her PT about it and she said often times babies aren’t asymmetrical when they start crawling, but she was ecstatic that Kaitlyn is crawling. (We were supposed to go today but can’t because Kaitlyn’s sick!). She can almost sit up on her own – if she’s in her bed (with ramp for her reflux) she can sit up on her own! This is actually bad news. It’s gotten VERY hard to feed her since she’s suddenly become much more mobile. Remember that Kaitlyn is fed via feeding pump 13 hours a day. She still vomiting. She’s supposed to be kept on an upright angle, but with her sitting (and tumbling over) she gets all wrapped up in her tubing, and ends up not with her head upright, which makes her vomit more. This is going to be very tough. As excited as I am about her new mobility, it’s tough on us. Her favorite place is to be on the floor with her toys all around her moving from item to item.

Her PT today on the phone said that she was hoping that Kaitlyn would be crawling by 1 year corrected (and she’s now 1 day shy of 10 months corrected – she’s not entirely crawling, but she’s well on her way!) This is great news. She is delayed, but she’s doing great.

Kaitlyn’s started smiling more again
After tempting us with those few days of smiles more than a month ago, she’s once again graced us with some wonderful tooth baring grins! Brian thinks he got a few giggles out of her the other day. BUT the best news of all is that she is grinning at us (not just the ceiling)!!!

I can’t tell you what this means to me! Remember that my daughter is one year old. I’ve been waiting so long for her to smile and acknowledge me as her mom! Brian was gone the first night it happened, but I was playing some games with her face and my face touching, and I got grin after grin after grin!

A few nights later when brian was here, she did it again, and I was able to capture a few on camera – tough to do, but you can see the total glee in her face and eyes, and dads’ too! She also took a liking to trying to bite dad’s chin!

Now she’s not smiling all the time, most time she still has her serious face, but we are getting grins thrown in here and there – I think she’s finally on her way to showing that she really is a happy baby.

OK, I thought I had the cutest baby before she smiled! Will you look at her now! (and you get a good view of those 2 bottom teeth finally!)

Yumm, dad's chin tastes good!

Vomting.
Well, wish I had good news to report there. She’s still vomiting. She’s still not eating. These pictures are doing food therapy at home (basically trying to get her to put items into her own mouth that have different textures…) The pictures look great, like she’s really eating, but no. I started giving her a mouthful or so (hardly, as she won’t open her mouth) of applesauce, and look what happened. Yes, that’s vomit all on her food tray also.

This morning, I just finished: striping her entire pack and play crib (that we use during the day for naps) as it was covered in vomit, her mini-swing is out in the driveway as I had to pressure wash it off (we can just barely still strap her in the swing but it keeps her upright) and my clothes, her clothes x3 and it was only 11am). Yes the vomit queen continues. Poor baby (and poor mom and dad)

OK, what am I supposed to do with stuff?

Hey, at least she's holding the brocoli and carrot right?

This is the face that she makes after actually putting something into her mouth, she's not a big fan.

And this folks is our life. This is why our darling doesn't eat. She got a tiny bit of applesauch in her mouth, which activiated her gag reflex, and sure enough. Look at the pool of vomit already on her tray. It took me a minute to grab the camera to caputre the "moment".

Click to watch Kaitlyn's vomit video