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

Another Touching Preemie Poem

How Preemie Moms Are Chosen
(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.

"A mirror will suffice."