Thursday, April 13, 2006

Failed Her Lung Test and New Pictures of Kaitlyn

Kaitlyn "failed" her lung test yesterday. The Lung test basically tests her lung capacity in a reduced oxygen environment (like a plane or Lake Tahoe high altitude). She didn't stat well, which means that instead of 98% oxygen in her blood, she went down to the 80's%.

She will have to be retested again in 6 months. This basically means she still does have Chronic Lung Disease and that she is still very susceptible to respiratory illnesses....Thank goodness she didn't the cold I had for 2 weeks - maybe it's all my breast milk.

In general the vomiting is reduced, but it still happens. Just today WHICH happens to be Brian's first day back at work, I had 2 big projectile vomits. Kaitlyn has no desire to eat whatsoever. I used to be able to get her to nipple a bit (20 ml's or so), now she just "plays" with the nipple with her tounge. At least she lets me put it in her mouth, where a month ago she fought the whole time and hated anything in her mouth.

She's getting to the point now where she is starting to put her hands in her mouth, exploring them. Anything in her mouth is a good thing. As we have a long road to go with her oral aversions.

Here are quite a few new pictures of Kaitlyn. She actually "looks" bigger in these pictures. She's almost 10 pounds now. Sounds like a lot to weigh, but remember she is officially over 3 months old and 10 pounds isn't very much for a 3 month old baby. (even though she is 6 months old technically)

Dad and I love kissing those chubby cheeks

Dad's been playing around with the facial hair - I'm personally not a big fan. Fireman can't have facial hair (besides a mustache) and so I think that's why so many firemen have mustaches. I think he looks like he should be a CHP officer with his aviator glasses or something.

Kaitlyn hanging out on Dad's shoulder. I had just given her a bath, so you can see her little blonde hairs sticking up.

Remember how small she used to be? She actually looks like a real baby here!

OK, this was Kaitlyn's first attempts at smiling (sadly, she hasn't done it since and this was a week ago). It was so great. She was sitting in her car seat, I was preparing her milk and when I went up to the car seat she very intently noticed me and then smiled - a few times. Enough time for me to get the camera and catch one! My heart just melted on the spot!

This is Kaitlyn's wonderful "Auntie Rose". Rose was Kaitlyn's NICU nurse when she was first born and has always been there with a supportive shoulder. She was so incredibly nice to come to our house to help me with Kaitlyn when Brian flew back east to attend his Grandfather's funeral. Kaitlyn had a feeding clinic appointment in SF, and Rose came with me. On the way home we decided to take a few pictures in front of the Golden Gate bridge.

It was super windy, and Kaitlyn wasn't very happy in the cold

Kaitlyn had a hold of Rose's hair in this picture, so Rose was laughing in pain as Kaitlyn was pulling her hair. We had some good chuckles.

OK, I guess I'm a terrible mom, but she was obviously not happy at all with the wind and she made me chuckle. Now remember, you can obviously tell she's "screaming" but with her paralyzed vocal chord it sounds more like a muted high-pitched "teradactyl" throaty noise. I don't know how better to explain it than that.

Now, if you know my husband, you KNOW that he never uses the computer. I think he's sent 2 emails in his life (both to me when we first started dating). But this picture was so great I had to quickly get my camera. You can see his continued experimenting with facial hair. Kaitlyn seems intrigued by it!

Kaitlyn doing some tummy time looking at her "Happy Apple". One of Kaitlyn's Early intervention (E.I.) specialists lent it to us as she really likes to look at it. I guess it's an older Fishcer Price toy from the 70's that isn't made any more. Kaitlyn is propped up on her green "pickle" as Brian calls it. See her clasping her hands. She loves to explore her hands.

Some more kisses from Dad

Kaitlyn actually reaching out for her dangly toy. It's so fun to watch her learn.

Close up up tummy time and hand clasping. Her eye brows get so red all the time. It's like she concentrating so hard they turn red.


Julie said...

She is absolutely beautiful! I just found your blog as I was looking for someone with a premie. I am a foster-mom with a 7 month old- 4 month adjusted age who was born at 25 weeks. She barely weighs 10 lbs. She is precious and strong little girl for all she has been through. It is great to read your story to hear how some of her earlier days probably were. I am praying for your sweet Kaitlyn- that she grows big and strong! She sure is a survivor!

Julie said...

Hey Liz, I tried to send some pics to what I believe to be your yahoo address- I can't post them since she is a foster babe. :)

HighlandGhillie said...

your baby is beautiful.

Anonymous said...

Zach has that same yellow lion and he loves it, looks like Kaitlyn does to. She has some funny faces also. Keep us posted on her lungs.

trish said...

liz - those pictures are great! she is so cute. i think gavin was only 10lbs at 3 months, so it sounds fine to me. keep those pictures coming!


Michelle Flannagan said...

Liz- Miss Kaitlyn looks beautiful as always. Sorry to hear about the lung test, I hope she will do better next time. It's good that she tolerates her belly time. Anna still does not like it (PT continues to work with her on it) but all that time on her back, her fine motor skills are advanced (much better than Declan's).

Hang in there! Michelle

Val (PROM) said...

Liz ~ I'm sorry to read that Kaitlyn didn't pass her lung test...

But she is adorable at almost 10 pounds now!

Take care


Stacy - mom to Tanner & Morgan said...

Liz -

Just wanted to pop in with a little FYI...

There is a growth chart out their for "micro preemies" - it adjusts for them starting out small. And, for me, it made me feel better about where my kids were on the growth chart (or, the fact that they were actually ON the growth chart). Ask your pediatrician for it - it's much different than just charting their "adjusted" age on the regular growth chart.

She looks beautiful to me...I know the vomit thing can take some time to work out. Tanenr "only" threw up about 1x a day - so frustrating when we were counting each mL.

Stacy - mom to Tanner & Morgan said...

I forgot...

Here is a local family who also lost one of their twins...I know it helped me to find others with similar stories...

Their little girls' 1st birthday is next Sunday.

Jenny said...

smiling while she reaches for her toy! don't take this the wrong way, but i think she is smiling quite a bit, but it really looks like she is making a funny face and it is thought to not be a smile.

skeybunny said...

Hi Liz,

I've been reading your blog from the beginning over the past few days. I saw/read two things in this post that seem like such an incredible coincidence. 1) My son Evan does not have a paralyzed vocal cord, but he does have some cranial nerve palsys and his cry was so quiet for the LONGEST time. He has been getting louder the past few months (mostly due to a type of e-stim therapy called VitalStim, which we are hoping will help his swallowing so he can eat orally instead of by g-tube). But I digress...I frequently refer to his cries as being very-pteradactyl. In fact, just today I was joking with a friend at work that I didn't have a little boy, I had a pteradactyl! 2) "Happy Apple"--I had this toy growing up and my mom saved it, so Evan plays with Happy Apple too now. It's such a great toy. Anyhow, just had to share (and I have no idea if you will ever read this comment, because it's burried in a post over a year old!).

Sarah (mom to Evan, 22 months, CHARGE Syndrome, ex-32 weeker, 100% g-tube fed)