Good-bye NICU, Hello WordPress

Now that we're home from the NICU for the second time, we hope never to be admitted to it again. So it's time to move on from the NICU and from our NICU blog. Because so many of you had trouble leaving comments on this blog, we decided to move to Wordpress. 

You can find Caley's new blog at http://caleyshouse.wordpress.com. Let us know if the comments work better on this one!

And to bid our NICU phase farewell, here's a little video montage of Caley's first 86 days in the NICU.

(If you have trouble with the embedded video, try to link directly to youtube here.)

Jiggety jog

We're home again (home again). And terrified that something bad could happen again. But we and Caley are more comfortable at home, and since there's nothing apparently wrong with Caley (other than a little cold, but she's asymptomatic), here we are.

We're pretty sleep-deprived right now, and don't have much else to report. Good night from Kirk, Caley & Jerry!

still here

Sorry for the delayed update -- it's been more than a little hectic being back in the NICU, and not nearly as comfortable without our private room or primary nurses. Caley has mostly been fine since we got here, though she did have a couple of bradycardic events again, which earned us some more time in the hospital.

The only thing "wrong" with Caley since we've been here is that she tested positive for rhinovirus -- the common cold. So she has a little bit of a cold, but really isn't showing any symptoms. Hard to know if that played a part in Thursday's event or not. What we do think caused it was some perfect storm of eating too much, straining to poop, and refluxing all at the same time, and then not being able to manage the results. (Thank goodness that Daddy, her hero, was there to help her out.) The doctors and nurses have helped us work out some ways to manage all of those relatively common problems a little better, and hopefully nothing like this will ever happen again.

So we're still in the NICU, but nothing significant is going on. Caley doesn't have any bruising or soreness from receiving CPR, and we've got a plan for avoiding it ever again. Hope to be back home soon!

sure glad we took that CPR class...

Caley gave us quite a scare this afternoon. Mommy noticed that she was spitting up (which she often does, just like any baby with reflux) and went to clear her mouth, when she noticed that Caley didn't look quite right. After picking her up and getting no response, Mommy saw that Caley was turning blue. Daddy started CPR, and it probably took a minute before Caley blinked and started crying and noticeably breathing again.

About then, the paramedics got to the house. By the time they examined her, Caley was breathing fine and her heart rate was fine (though she was pretty pale), but because we did CPR, they took her to the emergency room at Children's to get checked out. Everything looked fine there too, but they went ahead and re-admitted Caley to the hospital for observation overnight.

So we're back in the NICU tonight, and not in our comfy private room. It's going to be a long night ahead, but hopefully Caley will be just fine and back home tomorrow. We'll update everyone tomorrow.

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.

literally, but not figuratively

All our ducks in a row!

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!

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!

thoughts from Caley today

What is this contraption?

And where am I going?

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!

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!

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!

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...

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!

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!

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.

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!

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!

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!

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...

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!

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.

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.

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!

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?

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!

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.

this is the kind of day we had

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.

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!

Happy 2-Month Birthday!

It has been two months since we welcomed our little Caley into the world. Every day we learn something new about her, and she shows us more of her feisty little personality. We just love her to pieces!

Today was a busy day. First, we had a visit from Binky, Joe, Erin, and David (though the little guy couldn't come into the NICU), who are vacationing in Colorado right now. Then we talked to the nurse practitioner about vaccinations and started researching that issue -- we need to decide how to handle Caley's vaccination schedule. Then Caley had a bath, during which she both pulled out her feeding tube and had an explosive poop, and now she is zonked out.

As of this afternoon, Caley weighed 1460 grams -- that's 3 pounds, 3.5 ounces! She's also up to 38.5 centimeters, which is about 15 1/8 inches. She had a big growth spurt over the last few days, and we're really happy about that. As a result, she has finally grown out of some of her micro-preemie outfits. Several still fit, but there are at least three outfits that we can now declare too small. Mommy is very excited to bring in the next size of clothes, which have been all washed and ready to go for a couple of weeks, and play dress-up.

Because it was such a big day, we took lots of pictures, and thought we'd share a few.

Napping after her feeding 

Complaining about her bath 

All clean, and about as wire-free as she gets

(her EKG leads and pulse oximeter were back on shortly after we took this picture)

She has come so far in these two months. We can't wait until Caley can come home!

just a quick update

Everything is fine. We took a break from the hospital yesterday though -- after 60 days, we needed it.

Caley is 2 months old today, and we plan to take some new pictures. More to come later today!

maybe not worth a thousand words, but at least a few

Caley's feedings are now consolidated to 1.5 hours. She's having more trouble with reflux at that rate, but we're working through it. We also tried a little bottle-feeding again last night, and it didn't go well. She took one gulp and then forgot to breathe. OT told us she may still be a little too young to figure that out, though, so we'll try again next week.

It's been a very long week, so we'll just leave you with another cute picture.

first solo bath

Today Mommy gave Caley a bath all by herself. It was a little nerve-wracking to manage all of the wires and stuff without a nurse helping, but we got through it. And then Caley snuggled in her fun new towel:

(We couldn't pick just one picture to share.)

On the feeding front, Caley is now getting her 3-hour volume of formula over 1 hour and 45 minutes. She also had another visit from OT today, and took some formula by mouth on her pacifier. Very small steps, but we'll get there.

And for the first time, we can say that Caley is too big for some clothes. Sort of. The micro-preemie clothes all still fit, but her head is now too big for some of her matching hats. Good thing we have lots of handmade (crocheted and knitted, thanks to both Joan and Margery) hats to coordinate!

stinky NICU

Here's a random tidbit for you: Caley has been in the NICU for 57 days now, and this evening is the first time we've had a male nurse. (Hi Dan!) No commentary on that at the moment, just an observation.

Caley was preemie-in-a-box for most of the day. There's construction going on all around the hospital, and today the smell of tar (or maybe asphalt being laid) invaded the NICU. The nurses were concerned that the strong odor would bother the babies, particularly the young ones with respiratory difficulties like Caley. So she only got to visit with us for a little while this evening.

Tonight's weight was 1260 grams. Very slow progress on that front. Marie did talk to the occupational therapist this afternoon, and Caley is showing many of the signs that she's ready to try bottle feeding soon. We're looking forward to that!

100 grams return

It was a largely uneventful day. Caley had a visit from the Occupational Therapy folks, who apparently can work with preemies who have trouble learning to eat from a bottle. They watched her suck on a pacifier, and she's doing well with that. They will come in every day for a while and work on getting her to move to bottle feeding... we'll see how that goes.

Other than that, Caley just hung out today. No changes to food, oxygen, or meds. The nurse did weigh her again this morning, and her 100 gram loss from last night magically re-appeared. Crazy stuff.

a secret diet?

The scale says that Caley lost 100 grams today. We're pretty sure that's impossible. The nurse practitioner who was working this evening said not to worry about it, but we can't help but obsess over her weight. She has a lot to gain before she can come home!

In other news, Caley had another eye exam today, with the same results: "Your baby does not have ROP but could develop problems later because the retinal blood vessels are still not fully mature. Your baby should have an ROP exam again in 2 weeks." She also had a hearing screening, which she passed. We don't have to do another hearing screening for 18 months, but apparently there is a small risk that she will suffer from progressive hearing loss because of her time on the ventilator.

And thanks to Nurse Janelle for the picture of the day:

She grabbed the camera because Caley had her eyes wide open and was being cute. And of course then Caley closed her eyes. But you can see how her face is filling out -- no secret diets, Caley! Keep on packing on those ounces!

slumber party

Caley and Mommy had a slumber party on Saturday night. They got to play and snuggle while Caley was awake, and then Mommy turned on the turtle nightlight for Caley to go to sleep. She loves it!

Today's big news is that Caley tried a bottle for the first time. She only took about two small gulps, but she did great with it. We'll continue slowly acclimating Caley to the bottle and further consolidating her feedings before we actually start feeding her from the bottle. Teaching preemies to eat is a very slow process that requires a lot of patience.

And apparently Caley and Kodi had fun after Mommy left - this picture was sent to us:

What a fancy new hat!

twice the baby

Caley is up to 1240 grams, exactly twice her birth weight! She is doing pretty well with consolidating her feedings too -- no more reflux than usual.

Over the last few days, we've been trying to introduce new visual stimulation to Caley. She's still leery of the stuffed animal and two rattles that we've tried to put in her bed with her, but she does have one new love. Caley's cousins, Dade and Dani, gave her this cute turtle nightlight: http://www.cloudb.com/ssandf/turtle.html. We have been setting it on top of her isolette and shining the stars on the ceiling at night. Caley seems to be looking up at the light and shadows, and has something new to do when she's awake at night. Thanks Dade and Dani!

Finally, Nurse Kodi took a few pictures of Caley a couple of weeks ago (during Caley's baby shower that she missed, in fact). Here's one of Caley smiling that we had to share.

(And yes, she looks red - this was 2 days after her last blood transfusion.)

Friday Fotos

The paparazzi visited Caley today. First, there was her inaugural feature film appearance:

(It's grainy, but it's cute. And she had the hiccups.)

Then there were the stills:

Quackers returns! 

Working on her boxing skills 

It isn't easy being this cute!

Today we also started the process of consolidating Caley's feedings. She now receives 3 hours worth of food over 2.5 hours. That will slowly be weaned down to 3 hours worth of food over 30-45 minutes. Once she can tolerate that, it will be time to start trying a bottle. So far so good. She's had a little more reflux, but not too much. Hopefully her little digestive system can handle the increased volume!