Friday, November 03, 2006

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!

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


Kim said...

Minus the vomiting, it sounds like all great news! I am so thrilled that little Kaitlyn is smiling at Mom and Dad--what a great feeling that must be for all of you!

Cute, cute, cute pictures, too. What a gorgeous family!

sarah said...

Wow, she is really starting to progress. I know you must be beyond frustrated with the vomiting, I wish I had some wisdom to share in that department. I am hoping that it will soon improve.

I am so, so happy she is rewarding you with more frequent smiles. You are absolutely right, she is even more beautiful when she smiles! Despite all the frustration, your family is strong, courageous and beautiful. Keep up the progress, Kaitlyn!

Momma Monkey said...

She is so beautiful !! Her smile is very heart warming !!

My daughter had her second round of Synergist two weeks ago, and I had NO IDEA they were that expensive !! Thank God we're military and they are covered !!

Amy said...

I'm so thrilled for you that she is crawling and smiling. Oh, how rewarding that smiling must be for you and Brian. Now...I'll keep praying for the vomiting/eating situation.

Anonymous said...

Hi Liz
Its so great to see Miss K. smiling, I think this might have removed some of your fears. Hope the vomiting also goes away soon.
-Sid Mahesh

Jenny said...

Omg! she is getting SO BIG!

look at all that hair!

i love that she's smiling more and more....Keep it up Kaitlyn!

hopefully the vomiting will go away soon.....

Allison said...

Those smiles are priceless!

dcj said...

All such great news! She has a beautiful smile!

Jill & Terry said...

Even though she is throwing up, her weight looks really good. They say Zach is underweight, but he looks good to me. He just does not have a butt (like his dads side of the family) :)

I love to see her smile!!!!!!!!

Jen said...

I found your blog and can't help but follow your story - for many reasons but I also have a Kaitlyn of my own. I am so happy to hear she is smiling and at you. Everyone waits for this milestone and you are long overdue. That is such great news

Julie said...

Such great news! I am so happy that Kaitlyn is smiling more and sitting up! I am sad that vomitsville is still a place you have to be but I am praying that God will heal her of this soon!!! Love the pics!!

Anonymous said...

I came across your daughters website tonight. I myself had a preemie ( 29wks ) and felt drawn to your stories and reading about what you have gone through. I sit here with tears streaming down my face after watching the slide show of Corrine and Kaitlyns birth. I just wanted to let you know that you are such a wonderful person and although I might not know you, I know it takes someone VERY special to be a parent of a preemie! Byanne