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!

giving up the Starbucks habit

Another 50 grams tonight makes Caley 1220 grams! Apparently she took the "keep on growing" message to heart. Keep it going, little girl!

Caley also got another bath today. But we need to learn to give her baths in the evening, not after lunch. She got clean, got new clothes, snuggled up in a blanket, and slept soundly for about 7 hours. Here's an (edited and stylized) picture of her zonked out:

And Quackers pictures are coming -- really. But we didn't want to wake up Caley to play paparazzi today.

The biggest (and slightly terrifying) news of the day is that the doctor discontinued Caley's caffeine. Cold turkey. We hope she's outgrown those apnea-bradycardia spells enough that she doesn't need it anymore, but it's scary! We're praying that her 34-week-developed central nervous system comes through for her.

gourmet dining, Caley-style

Caley's continuous feeds are up to 7 ml per hour, which is her full-volume feed based on her weight right now. The new attending doctor decided that once she's clearly tolerating that volume, we're going to slowly work on shifting her to bolus feeds. So, for example, they might give her a larger volume over 2 hours and then give her a 2 hour break, or something like that. Once we get her to a point where she can handle full-volume bolus feeds through her feeding tube, we'll start trying to give her a bottle. And we'll also have to change formulas by then because Elecare, the one she's on now, tastes and smells AWFUL. Some spilled on Mommy's shirt yesterday... ugh.

Caley's nurse last night and tonight was Susie. She thinks Caley is getting to be a bored little preemie. As we've mentioned before, Caley is something of a night owl, and has long periods of alertness during the night shift. Last night, she was just crying and looking around, but Susie could find nothing wrong. We're going to start slowly trying to introduce some new visual stimulation to Caley (probably a stuffed animal or rattle at first) and see if that helps. Until she can maintain her own body temperature, though, we won't be able to try a swing or bouncy seat.

Finally, Caley gained 50 grams and she's up to 1170 grams. She needs to get to 1800 grams before she can move out of the isolette. Go Caley!

slow day

Not much to report today. Caley's food is up to 6.5 ml per hour, and she's doing fine with it. Her reflux wasn't too bad today. She snuggled with Mommy for a while, and got to hang out with Nurse Kodi.

Sadly, her weight stayed the same: 1120 grams. We thought for sure she was working on growing today because she slept a little more than normal. Oh well -- maybe tomorrow!

A look back

We've been lamenting Caley's slow growth recently (thanks at least in part to her reflux), but today let's take a look back at how far she's come.

Weight

May 31: 620 grams (1 pound, 6 ounces)

July 18: 1120 grams (2 pounds, 7.5 ounces)

Length

May 31: 13 inches

July 16: 14.5 inches

Diapers

May 31: swimming in Preemie XS diapers

July 18: belly too big for Preemie XS; swimming in Preemie S diapers

Food

May 31: TPN & lipids through a PICC line

July 18: 6 ml of formula per hour through an NG feeding tube

Clothes

May 31: none

July 18: micro-preemie clothes (for 1-3 pounds) finally fit!

Photos

May 31

July 12

So we're trying to feel good about how far she's come in 7 weeks. Her food volume was increased to 6 ml per hour today, and is going up to 7 ml by Wednesday morning. Caley gained about 16 grams last night, which is better than she had been doing. Keep on growing, Caley!

Finally, just a note that we're thrilled to only be worrying about reflux and eating right now. As several of you have pointed out, this is a very normal newborn problem. And thanks for all of your helpful advice on how to manage it. Here's to a little normalcy!

short day

We only got to visit with Caley for a brief time today. Another new preemie in the NICU was having a PDA ligation surgery done bed-side, and they closed down the whole unit for the afternoon so they could maintain a sterile area. This is the same surgery that Caley had done on her second day, and they followed the same procedures then -- so we were very understanding!

Frankly, Caley probably needed a rest. Her reflux is worse when we move her in and out of the incubator. And because she's still on continuous feeds, she never really gets a break from it, like she would if she were on bottles. All suggestions for managing reflux are welcome. Not only is it painful and annoying to her, it's slowing down her weight gain too. She has been averaging only about 10 grams per day the last few days. At that rate, we'll be in the NICU until Thanksgiving.

There is a nutritionist in the NICU who we plan to talk with this week about how to get Caley gaining more weight. In the meantime, pray for a fat little baby!

Miss Grumpy Face

Caley-Bug continues to have serious reflux problems, and now is also having a lot of head congestion. Caley's nurse is going to talk to the doctors on rounds tonight and see if there's anything we can do to help her.

We visited with Caley for several hours this evening and she did really well while being held. Except for constantly pulling out her cannula. She has a very expressive face already, and let us know how unhappy she was every time we put it back in!

reflux = ornery baby

Caley is having a lot of trouble with reflux. Unfortunately, it seems like it isn't going to be a transient thing, and it's beginning to be painful for her. It's also affecting her weight gain, which has slowed down over the last few days. Though this is certainly a less significant issue than some of her others, it's one that likely will keep her in the hospital longer.

Caley also was busy pulling on her feeding tube and her nasal cannula much of the day. Generally, she was just ornery all day. It was exhausting for her, for us, and even for Nurse Kodi. We need to rest up for a weekend of wrangling the baby!

a post by Caley

Hello world! Today, I had to take matters into my own hands. Mom's posts have gotten boring, and I had a busy day to tell you about.

I had a new nurse today, Pam, who didn't know all of my tricks, so it was time to get some things done. I have been trying to tell Kodi, Stacey, Mommy, and Daddy how much I hate that stupid yellow tube in my mouth. I keep pulling on it, licking at it, and gagging on it. But they still didn't get it. So when Pam wasn't looking today, I just yanked it out! My one mistake was celebrating my victory by waving around the tube -- apparently, the formula flying everywhere alerted Pam to my accomplishment. And she put the stupid thing back in. But then I did it again! Ha!

Then some more people came in my room, and looked in my nose. Then they did that yucky suction thing in both my mouth and nose. And then -- you won't believe this -- they put the stupid yellow tube in my nose! It isn't quite as annoying there, so I haven't been licking or gagging as much, but I've still been yanking on it every chance I get.

My best chance came when Daddy came to visit me today. Mommy had been holding me all afternoon, and she stops me from pulling on my tubes. But Daddy likes to nap with me. So when he wasn't looking, I yanked on that yellow tube again, and got it like 2 inches out! Then it hurt some, so I started crying. Mommy got Nurse Rachel, who put the stupid yellow tube back in my nose. Rachel also pulled some liquid out of my tummy and tested the pH level, which wasn't quite right. And then I had to get an x-ray to make sure the yellow tube was in the right place. It was, so Rachel gave me some 26 calorie food tonight.

Then I got very mad and cried lots, until Mommy and Daddy finally changed my diaper. Then they wrapped me up in my warm pink blanket, gave me my ninny, and I could finally go to sleep. I told you -- it was a busy day!

1 kilogram taken away!

Caley got gypped. As we reported last night, she was 1074 grams. Her weight was taken on a stand-alone scale, as you saw. Today Caley got a new isolette/condo/house in her room. This one has a functioning built-in scale, unlike the last one (which prompted the stand-alone scale). And this one says she only weighs 980 grams! So for now, her official weight is back under 1 kilogram.

Caley also got a bath today. Her "spitting up" has been tentatively labeled reflux, and it was making her a little ripe. We're going to wait and see if the reflux improves before doing anything else -- it doesn't seem to be painful for her, just annoying. In the meantime, she's up to 5.5 ml per hour of Elecare, fortified to make it 24 calories per ml as of this evening. Aside from the reflux, she seems to be doing well with her food right now.

And we also saw some progress on the breathing front. Caley's oxygen flow was reduced from 2 liters to 1 liter today, and she's tolerating it just fine.

Caley continues to have more regular periods of alertness where she looks around (and looks at us, we think!) and checks out her surroundings. We love spending time with her and seeing her personality developing!


P.S. A few people have told us they had trouble leaving comments on the blog. To leave a comment, click on the "[#] comments" link at the bottom of a post. It will take you to a page where you can both see other comments left, and also leave your own. Hope that helps!

6 weeks old

Caley is 6 weeks old today. She also passed the 1 kilogram mark -- she is 1074 grams! We took a picture during her weigh-in this evening.

The way this is cropped, she looks much bigger than she really is. 1074 grams is just over 2 pounds, 5 ounces, and she's still just 14.5 inches. But she's definitely growing!

Nothing new today to report. Caley's food has been increased over the last couple of days, and is now being fortified to increase her calorie intake. She is digesting fine, but has been spitting up quite a bit. We plan to talk about that with the doctor tomorrow.

For now, Caley says night-night!

the eyes have it

Caley had her first eye exam today. We haven't yet read the written report, but basically, she shows no signs of ROP (retinopathy of prematurity). Her eyeballs are round and her pupils dilate appropriately. That's about all we digested from the oral report, but it was good news. Caley will continue to have eye exams every 2 weeks until she goes home because problems can develop at any point along the way, but we were encouraged by the results.

We only had a short visit with Caley today -- we've been busy finishing up some projects for her room while GG is here, and we also had to deal with car stuff. But Caley did really well today, and is progressing nicely with her feedings. Holding our collective breath that she gets the feeding stuff down this time!

play day

Caley is now at 33 weeks! She continues to look very "ruddy," thanks to her infusion of blood. This is a good thing.

Today was a quiet day in terms of Caley's medical care -- other than increasing her food a little bit, nothing changed. She had a very stable day, got two visits (and holds) from Mommy, and played with Nurse Kodi making footprints and taking pictures, among other things.

And today also was Caley's first baby shower! While most babies attend their showers while still in their mommy's belly, Caley made her appearance a little too early for that. So we took lots of baby pictures to share with everyone at her shower. The shower was a wonderful time, with lots of good food and good people. We feel so fortunate and thankful for all of the supportive and generous friends and family that we have!

Tomorrow is Caley's first eye exam, which we understand is not a particularly pleasant experience. We plan to not observe, but are praying it goes well. She certainly acts like she can see us during her "quiet alert" periods -- we'll see what the doctors say.

another two-fer

In sum: Caley is fine, but we are exhausted.

On Friday, Caley had to receive another blood transfusion. Despite the EPO treatment and the iron she had been receiving, her red blood cell level remained too low for the doctor's liking. So they gave her a "boost" with some more blood, and now she is very pink! We didn't realize how pale she had gotten until we saw her today - pictures to come soon. The other apparent result of the blood is that Caley has been having very little apnea, and no bradycardia events since the transfusion.

The doctor also decided to try Caley on a formula called Elecare for a while instead of milk, since she has been showing signs of feeding intolerance (primarily all the air in her stomach, and an occasional loopy bowel). She started on that last night, and seems to be doing okay with it so far.

Caley also had to get a new IV yesterday because the last one went bad. So now her left arm is pinned down instead of her right one. She isn't any happier about that. And we never did learn what infection - or other ailment - Caley may have had earlier this week. But she seems fine now, and they have stopped her antibiotics.

Today, Caley got to snuggle with Daddy for a couple of hours. He helped her work on taking long, deep breaths. And Mommy visited later today, talked to Caley for a while, and got her tucked in to bed for the evening.

Saturday nights mean weighing and measuring at the hospital. Caley now weighs in at 980 grams (2 pounds, 2.5 ounces), and is 36.5 centimeters (14.4 inches) long. She'll be over a kilogram soon!

who needs a stinkin' IV?

Caley looked a little better today than she did yesterday, so we're hoping that the antibiotics are helping her. All of the blood and urine cultures are negative so far, though, so if she had another infection, we don't know where it was.

Last night was rough for little Caley. She was having trouble with her breathing again (mostly, the remembering to breathe part) and had at least 6 apnea-bradycardia episodes overnight. The doctors decided to increase her back up to 2 liters of high-flow oxygen, and that seemed to help. Today, she only had one apnea spell from which she didn't recover on her own. She'll stay on the 2-liter flow for a while longer, but her oxygen needs continue to be low. She was breathing room air most of the day.

Still no food for Caley, though she is receiving nutrients through her TPN and lipids. After a weight drop last night, she was back up to 930 grams today. She may get to try food again tomorrow evening, but it depends on how tomorrow goes.

And we know Caley is feeling at least a little bit better because she was back to being feisty today. She tried to pull out her IV, and only because of serious re-taping efforts by Nurse Carly, was she unsuccessful. Though the nurses probably don't appreciate it, we were glad to see that she's back to being ornery!

back and forth

Caley is off food again. This morning when Marie got to the hospital, Caley's temperature was low, her belly looked funny, and she wasn't acting like her usual self. The nurse practitioner agreed that her stomach looked worse and that she was acting different, so we've gone into cautious mode. They took another x-ray (same as before -- lots of air, but nothing suspicious) and took more blood to check her CBC and CRP.

Nothing is jumping out as being clearly problematic, but it is possible that she has another infection of some sort. So her feeds are stopped again, she's on antibiotics, and they took blood cultures and a urine sample. Caley will get TPN and lipids by IV, starting this evening, since she's not getting any milk. We probably won't know more until Friday.

Caley seems to just be sleeping a lot. We're worrying a lot. These ups and downs can drive you crazy! Hope we have some more ups to report soon.

same, new, same, funny, big thanks!

Caley's x-ray this morning looked the same as yesterday -- she has a lot of air in her stomach and intestines, but it doesn't look like NEC. The doctors also did complete bloodwork on Caley to see if anything looked suspicious. Her CRP level was slightly elevated (that's the inflammation/infection marker), but her white blood cell count is fine, so they decided to go ahead and begin her feedings again. She's now on unfortified milk at a rate of 3 ml per hour. Hopefully she'll do better this time around.

On the breathing front, Caley was doing really well today. This morning she was on 1 liter of air flow through the cannula and, when she was laying on her stomach, she didn't need any supplemental oxygen -- she was breathing room air. And this afternoon, someone inadvertently turned her down to 0.5 liter, and she was still breathing room air. We could hardly believe it! She's still having a few apnea-bradycardia episodes, but so long as she remembers to breathe, her lungs seem to be getting stronger.

Caley also had a follow-up head ultrasound today. It looked the same as it did 4 weeks ago -- she has a small bleed, but they expect it to resolve on its own. Another thing for which we have to just wait and see.

Finally, here's one more picture from yesterday -- it makes us laugh.

Thanks to everyone we've heard from lately, letting us know you're still following Caley's progress and praying for her. We appreciate you all more than you can know.

Two days in one

Sorry we didn't post yesterday -- we know some of you were worried. We decided to go to the hospital late last night, after hearing repeatedly that Caley is a night owl. She is. Marie ended up holding Caley for a very long time, and we didn't get home until 1 a.m. So no blog post, but there wasn't much to report from yesterday.

Today, though, was another challenging one. We got a call from the hospital this morning because Caley had spit up, and they were worried it might be a sign of developing NEC. They stopped her feeds, took an x-ray of her abdomen, and started her on IV fluids. The x-ray this morning didn't show any signs of NEC, and neither did the follow-up x-ray this evening. But they're leaving her on the IV fluids overnight, and taking one more x-ray in the morning. If it still looks clear, the doctor likely will re-start her feedings.

In the midst of that anxiety, a couple of positive things happened. Caley's oxygen flow was reduced to 1 liter this afternoon, and she seems to be doing fine with it. And Marie gave Caley her first bath! Here's a picture of her all clean afterwards:

Then she zonked out for 4 hours while Mommy held her. And when it was bedtime, she was awake again. So we gave her a ninny and it seemed to help calm her and get her headed towards sleep.

It was definitely a day of mixed emotions. We're praying that Caley doesn't develop NEC, and gets back on track with her feedings.

grumpy

Apparently even preemies can have grumpy days. After we bragged yesterday about how well Caley does when we hold her, today she didn't seem to want to be held. So Kirk held her for about an hour, and that was it.

Only two small changes today: Caley is up to 5.5 ml of milk per hour, and her oxygen flow was reduced from 2L to 1.5L. We're hoping that the reduced oxygen flow will help with Caley's gassy belly.

Caley is having more regular periods of alertness, usually after a diaper change. And late at night...it appears that she might be a night owl like Mommy. We enjoy watching her look around with eyes wide open, even though we know she can't see much other than light and shadows right now. Maybe one day she'll let us get a decent picture with her eyes open!

one less line

We were surprised (and happy) to find that Caley had her PICC line removed today! Although the original plan had been to wait until she was on full feeds to remove the PICC line, the doctor decided that Caley was doing well enough that it wasn't worth the continued risk of infection from the line. So out it came.

Other than that, it was a pretty uneventful day. Just one bradycardia episode that we heard about, and Caley brought herself out of it. She's up to 5 ml of milk every hour, and it's being fortified now to increase the caloric content. Hopefully she'll gain weight even faster. Her belly still is getting a little gassy from the high-flow oxygen, but just venting her seems to take care of it for now.

Finally, Marie held Caley for a while this evening and, as always, Caley was happy about that. It's amazing how her heart rate and breathing are affected by being held by Mommy or Daddy. Caley has some new tests coming up next week, so we're hoping she continues on the positive trend of the last couple days.