Wednesday, August 31, 2011

I'm 3 months old!




Okay, Mommy, enough pictures!

Caley is 3 months old today! She's doing pretty well at home, and Mommy and Daddy are learning... slowly. We had our first pediatrician appointment on Monday, and she was up to 4 pounds, 13 ounces -- almost 6 ounces more than when she left the NICU last Thursday! She's 16.5 inches long and her head circumference is 12.5 inches. Still less than the 5th percentile (even for her adjusted age), but light-years ahead of where she started!

We have been introducing Caley to new toys, bouncy seats, and swings in the last week. Her current favorite item is the playmat she received from the Garcias. She likes to lay on it and talk to all of the toys hanging down from the toy bars. Video to come soon!

As for us, we're working on getting back into a more normal schedule (or a "new normal" -- life with a newborn), now that our days don't revolve around trips to the hospital. We hope we can start to get caught up on conversations with all of you, as well as our embarrassingly late thank yous. Despite the belated calls, notes, and emails, we hope you all know how much gratitude and love we have for all of you who helped us through the NICU phase in so many different ways.

Sunday, August 28, 2011

what do you mean?

I wasn't due until TODAY?!?

Today was Marie's due date. Instead of waiting around to go into labor, we've spent the weekend trying to figure out how to manage life with a sassy baby at home. Kirk is taking this week off from work, and we're glad we have another week to try to get our schedule sorted out!

Caley is doing well at home. She's eating pretty much every 3 hours and, for the most part, is eating just as much as she was in the hospital. We started her on baby Prevacid last week while she was still in the hospital, and it seems to be helping now -- her reflux doesn't seem to be nearly as painful for her. And when it does bother her too much, we let her sleep in the bouncy seat, which suits her just fine.

(taken while typing this post)

As you can see, Caley did come home on oxygen. She's on 1/32 of a liter flow, which is as low as you can go and still be on oxygen. Not sure if it's completely accurate, but we were told that receiving that volume of oxygen is equivalent to us living at sea level instead of in Denver. Other than Prevacid and a little bit of oxygen, the only other thing she's receiving right now is her vitamins.

Tomorrow we have our first appointment with the pediatrician, and hopefully he'll agree with our assessment that her first three days at home have been great!

Friday, August 26, 2011

whee!

I'm home!

After 86 long days in the NICU, Caley came home on Thursday afternoon. We're working on trying to get settled into a routine, but we did manage to give Caley her first bath at home today. She seemed to like it just fine.

By popular demand, we will continue to post updates and pictures on the blog (though perhaps not every day). We know Caley has quite the fan club!

Wednesday, August 24, 2011

2 kilograms!

Tonight Caley passed the 2-kilogram mark -- 2.008 kg, to be exact. No pictures from today, but it was a good one.

Caley is currently laying in her car bed in the NICU, doing her car-seat challenge for the third time. Then it's on to the room-air challenge. Once again, we're taking the small steps towards discharge. Keep those prayers and good thoughts coming!

Tuesday, August 23, 2011

could I be any cuter?

I'm 12 weeks old!

preemie jail

One day down with no bradycardia. Caley has just been hanging out, trying on more of her clothes that almost fit.


And see those white bars? No, that's not preemie jail -- it's Caley's first real crib in the NICU!

Sunday, August 21, 2011

still here

There was a chance that Caley could have gone home today. But she let us know yesterday that she's not quite ready, by having a noteworthy bradycardia episode. So here we stay.

I'm still minus 1 week old anyway! 

But this is how Mommy feels.

NICU updates will continue for a while longer. Pray for no more bradys!

Saturday, August 20, 2011

around the world...

Friday was 80 days in the NICU. Mommy is so over it.

So is Caley!

We had a lovely baby shower at Mommy's work on Friday too. Though it was weird to be back in the office while Caley is still in the NICU, it was nice to see so many friendly faces. And we were once again reminded how fortunate we are -- everyone has been so kind, generous, and super supportive through everything. We will never be able to thank all of our friends and family enough!

Keep your fingers crossed and prayers strong for a homecoming in the near future...

Thursday, August 18, 2011

she's once, twice, three times the baby

(With apologies to Lionel Richie.) Caley weighed in at 1.87 kilograms last night. From her birth weight of 620 grams, she has now more than tripled her own weight!

Caley's doctor is closely tracking her bradycardia spells (when her heart rate drops below 100) at the moment, to ensure that they're not a sign of some other problem. That's a little nerve-wracking but Caley is acting like her usual self, so hopefully everything is just fine.

And Caley took time out of her busy schedule yesterday to pose for a picture with Kodi and Stacey, two of the best nurses ever!

Look at my round head!

Wednesday, August 17, 2011

4 pounds!

Caley finally passed the 4-pound mark last night, weighing in at 1840 grams. Unfortunately, she also managed to fail her "car seat challenge" last night... even though she was in a car bed.

But here she is, front and back!



Tuesday, August 16, 2011

a bouncy seat for Caley

Caley has just tried out her bouncy seat in the last couple of days, but seems to love it!

Thanks Aunt Liz, Uncle Jason & Cousin Brady!

As you can see, she does require some extra padding for now. Her feet are just at the bottom of the safety harness that should be between her legs.

Caley gained 14 grams last night, which is good, but the doctor still would like to see stronger weight gains from her. Unfortunately, Caley had several little bradycardia episodes today, which may prolong her NICU stay. She recovered from all of them on her own, but it will be up to the doctor to decide how concerning they are.

Slowly but surely, we're moving towards discharge day.

Monday, August 15, 2011

light at the end of the tunnel

Not much new to report today. Caley is doing great with her bottles lately, and is still maintaining her body temperature in an open crib. Her weight gain has slowed down (and she even lost weight a few nights in a row), but hopefully that will pick up again soon.

We're starting to talk about when she might come home...! The regular weight gain is one hurdle we need to get over before that can happen, though. Keep growing, Caley!

Sunday, August 14, 2011

out of the box

Caley is out of her incubator! Nurse Kodi "popped the top" of Caley's box on Saturday morning, and Caley has been maintaining her body temperature just fine. That puts us one step closer to bringing Caley home. Here Caley is, napping in her open bed with her monkey and bug keeping her company.


And Caley has taken over Quackers' role as cutest duck in the house.


Look how big she is! Well, at least compared to her first Quackers shot:


She has come so far!

Saturday, August 13, 2011

Aunt Shelley is my photographer

I love when Daddy feeds me 

But sometimes I have to eat Mommy's finger when she's too slow with my food 

Mommy and Daddy do this a lot 

But who can blame them? Look how cute I am!

Thursday, August 11, 2011

nothing much to say

Not much to report today. We continued working on bottles with Caley. She slept a lot. She watched her first Broncos game.

We also found a pediatrician for Caley to see once she's discharged. Cross that one off the list. Now, if we could just finish her bedroom...

Wednesday, August 10, 2011

on second thought...

Overnight, Caley decided that the thrill was gone with bottle-feeding. She got her feeding tube back for a couple of meals, but then it came out again today. She's taking the bottles, but sometimes it takes a little convincing.

Marie is spending the night at the hospital tonight, just to see if she can get Caley to take her nighttime feedings by bottle. Wish us luck!

And Caley is up to 1800 grams this evening -- so close to 4 pounds!

Tuesday, August 9, 2011

one more gone!

Caley's feeding tube is gone -- she's taking all of her food by bottle now!


And when she's tired of Mommy taking too many pictures, she makes this face to tell us she's hungry.


Monday, August 8, 2011

just when you start to relax...

The hospital staff (and we) have started using the expression "when Caley goes home." It's something we had been afraid to say for a long time. But now we're hopeful that day will come within the next month.

So, of course, today we had a little setback. Nothing major at this point, but Caley had her bi-weekly eye exam today and has developed retinopathy of prematurity (ROP). Most of the time ROP resolves itself and doesn't cause any lasting problems, so we'll pray that's what happens, and that her ROP doesn't become more severe.

Trying to remain optimistic, but being realistic, Caley also still has a small bleed in her brain and chronic lung disease. We'll be optimistic because neither seem to be causing any major problems at the moment. Today's eye exam was just a little reminder that things like this could crop up for Caley as she continues to develop. We haven't even reached Marie's due date yet (it was August 28), and Caley already has done 10 weeks of developing on her own!

We'll leave you with a shot of Caley complaining about Daddy giving her a bath.


Sunday, August 7, 2011

and I wear a cute strawberry hat

Look at me! I drink from bottles!

Caley continues to work on her bottle-feeding skills. She's up to about 5 bottles per day, and gets her other 3 feedings by gavage (that's the fancy word for the yellow feeding tube in her nose). Most bottles, she takes her full feed volume -- which was just increased to 26 ml -- but sometimes she goes to sleep before she finishes. Among the many things we need to accomplish before Caley can go home, she'll need to be able to take 8 full bottles every day. Keep going, little Caley!

Saturday, August 6, 2011

ballerina or wild child?

Caley is trying out her new, bigger size wardrobe (she's all the way up to "Preemie"). The sleeves are still a little long, but she's working on growing into them. So what do you think...

ballerina... 

or wild child?

Friday, August 5, 2011

remember to breathe

Caley took 3 full bottles today! And by "full," we mean 23 ml (less than 1 ounce), but it's all relative. She's starting to show physical signs of hunger, like rooting and waking up around the right time, which is good. And she seems to be learning that sucking on the bottle fills up her tummy.

But we're still working on teaching her to breathe while she eats. It's an interesting process. We basically force her to stop eating and breathe. We'll let her take 3-5 sucks on the bottle, then tip it down so she doesn't get any more food until she pauses to breathe. The nurses call this "pacing" her feeding. Eventually, she will be able to pace herself, and we won't have to remind her to breathe. But for now, it's a slightly stressful event for us to feed her the bottle and keep her breathing.

We haven't given a weight report lately -- Caley is up to 1610 grams as of Friday night, which is just a hair over 3.5 pounds. Once she gets to 1700 grams, they might actually let her come out of her "box" (the isolette/incubator/condo) and into a real crib. We're hoping for that in the next week.

Caley is planning to have a party weekend. Her favorite nurses are working this weekend, so we know she's in great hands!

Thursday, August 4, 2011

lots of time spent eating

Caley is working hard on learning how the whole bottle thing works. Today we were able to get her to take a bottle for two feedings in a row. She didn't eat the full amount either time, but took 18 ml and then 12 ml (her full volume right now is 23 ml, so she got the difference through her feeding tube). Then she passed out.

Caley also got her second vaccination today, and she's doing great with those. Not much else to report for now.

Tuesday, August 2, 2011

such a big girl!

Some big news today! Caley was switched to low-flow oxygen, and is now on a rate of only 25 cc (that's 0.025 liter, compared to the 0.5 liter she had been on), though it's 100 percent oxygen now instead of a mixture of air and oxygen. She's doing great so far.

We also worked with the occupational therapist some more on introducing bottles to Caley. When it still wasn't going so well, we asked about switching nipples. This afternoon, Nurse Kodi tried the new nipple, and Caley took 25 ml of formula in one sitting! Then she passed out. Eating is hard work when you're that little. But we know she can manage a bottle, and we'll keep working on it a little bit at a time.

And Aunt Shelley helped Mommy give Caley a bath today. We were very busy!


Despite all of Caley's amazing progress, we probably still have at least another month in the NICU. We'll keep on truckin', with all of your love and support.

Monday, August 1, 2011

the feeding tube is so much easier

Today we finally got the official word on how long Caley was at birth (there was much confusion about that in the midst of everything else that happened at her birth). She was 29.5 cm -- less than a foot long. Now she is 38.5 cm, and has grown even more than we realized!

Caley does now fit in the smallest of the preemie-sized clothes we have (you'd be amazed at the significant variation in sizes among clothes all labeled "preemie"). And her head is big enough to start wearing one of her fancy headbands.


As you can see, she wasn't impressed by the whole thing. (She was feeding tube and oxygen free for several minutes though!)

Mommy spent quite a while today dealing with Caley's reflux, and simultaneously trying to get her to take a bottle. It's far more exhausting than she ever imagined. Good wishes and support for getting Caley to eat on her own would be much appreciated!