Monday, October 31, 2011

Cam's first halloween!

Needless to say, she looked super cute in her costume. We couldn't keep it on for very long and she was being a super sleepy baby but here are the pics:

Other than that today was just alright... it seemed to be going very well in the beginning but then things got really frustrating. This morning her doctor told me he feels she is ready to be taken off the CPAP!!! Woohoo! I wasn't expecting it this early but he is going to do it tomorrow (November 1st). I really, really, really want this to work but I am preparing myself for disappointment. I know he wouldn't do it if he didn't think she was ready but the pessimist in me can't help but expect that she will end up back on the CPAP within a couple of days. I guess the NICU does that to you.

Her doctor is also hoping that she will be on bottles in about two and half weeks. That was pretty exciting but the rule of thumb is that the baby needs to weigh about 3 lb 5 oz before the bottle. He said that he may start her a bit before that since she is gaining a little slower than average but would like her to be somewhat close. I was very hopeful, assuming that when I went in later tonight she would be up an ounce. Not the case, she was down over half an ounce. Again. She has been sitting at 2 lb 9 oz for the longest time. She had gone up to 2 lb 10 oz again on Sunday night and then back down to 2 lb 9 oz tonight for the third time. It starts to feel like she will never gain a substantial amount of weight. And then the respiratory therapist told me not to be surprised if she loses weight once she comes off the CPAP since she'll be doing more work herself and burning more calories. Wonderful. It's so sad to me that if I was still pregnant she would easily be over 4 lbs by now.

And to add to all this, Josh has a cold. He couldn't come see her in her costume so he was really bummed. And then that gives me about a 0% chance of not getting it, meaning I won't be able to go see her for at least 3 or 4 days which is a pretty horrible feeling. I don't know what I am going to do with myself during those couple of days. I'm dreading waking up one morning with a sore throat :(

So nothing truly terrible happened today and we do have some good things to look forward to but sometimes it is so hard not to get caught up in the little things. I can't stand the back and forth of her weight. It drives me crazy. And if I get sick I will be so upset but we shall see. For now I'm keeping my fingers crossed I don't get Josh's cold (not gonna happen) and that Cameron transitions to the CPAP wonderfully!!!

Sunday, October 30, 2011

Quick update

Cameron is doing awesome, her breathing issues have almost completely resolved and she just loves her kangaroo care! Her vitals paint the picture that she is truly happiest when she's kangarooing. If she is fussy, it calms her down entirely and she falls fast asleep.

Her weight is down from 2 lb 9.7 oz to 2 lb 9.3 oz, so not down by much at all which is good because we had been expecting a couple days where she didn't make any progress. But she is tolerating full feeds just fine, still digesting quickly and pooping like a champ! Slowly but surely we are working towards her next big milestones, 3 lbs and coming off the CPAP.

I will post my Halloween update soon :D

Oh and her head ultrasound came back normal just as we thought it would!

Friday, October 28, 2011

I have a chubby baby

Last night Cam was up to just about 2 lb 10 oz (2 lb 9.7 oz)!!! We have surpassed two and a half pounds and we're working towards the big 3 :) Her difference in size is starting to become obvious to the naked eye. Here's the difference from 1 week old to 5 weeks old:
September 30, 6 days old
October 28, 4 weeks 6 days old
The quality on the pictures isn't great because they are taken through the isolette glass but look at that little chubster! I think she looks so much bigger although it's hard to tell in length but she is measuring over an inch longer than at birth. If you click on the photos to enlarge them you can see much better. Also, notice the band aid on her left arm. Yep, that's the spot the PICC line was inserted. No more dressing, no more IV cords, she's now got two free arms! That means she is up to full feeds or 120 calories of breast milk per kilogram. She is 1.182 kg so she needs about 148 calories per day. The last two days the increased her feeds pretty quickly in order to get her PICC line out so they gave her the day off today. But from here on out they will increase her feeds only based on her weight gain to keep her at the 120 calorie per kilogram ratio.

They did a chest x-ray to look at her lungs and heart again today. It showed a little bit of fluid in the lungs but not as much as the doctor was expecting so he was definitely happy with the results. Also because of how hard her heart has to work due to the PDA he was expecting it to be enlarged and it was actually the proper size for her body so again he was satisfied with that. Basically what these results tell him is that her PDA is not causing her a problem where we would need to think about closing it with the surgery. It's always such a relief to get good test results. On that note this morning she also had another head ultrasound to check for bleeding. As with the ones she's already had, it was just routine and they don't expect to find anything but we won't get official results until later today.

That's it for news today but overall, she is growing like a weed and doing really well. Don't be surprised if she doesn't gain for a couple days or even loses weight as her body fluids adjust to not having the PICC. Hopefully that won't happen but I'm told after that she will take off :D I won't update again for a day or so unless something happens with her ultrasound, no news is good news!

Wednesday, October 26, 2011

A big day and a big post

In the spirit of Halloween, I wanted to share something I thought was really cool!! I love the movie Nightmare Before Christmas so I chose this song but this family does a bunch of others like Monster Mash and Thriller.

Anyways, the doctor did a bunch of things with Cameron today that I'm really excited about. First and foremost, he fiiiinnnnallllyyy took her off of the BiPap and put her back on the regular CPAP. Of course she's doing just fine with it as I knew she would, they definitely could have done it a while ago but they were just being cautious which I understand. They want to give her plenty of time and don't want to push her too far. He said it would be at least a week before he would think about taking her off of CPAP but I'm positive it will be longer than that for the same reason it took so long on the BiPap.

They drew a ton of labs to check a bunch of things that are routine at her age. Her hematocrit and other blood counts came back normal so they took her off the epogen! No blood transfusions for Cameron woohoooo!!!! These are SO common and rarely does a preemie Cam's age escape them but there are risks involved with transfusions so the doctors at our NICU like to try and see if epogen will work first because it is far less invasive. And it worked!!! As you can tell I am reeeaally excited about this :) She may need to go back on the epogen at some point but they say the older she gets the better it will work for her so I think it is safe to say we got through the NICU transfusion free!

We are making good headway on her feedings, they are increasing them in larger amounts and in increased frequencies. She continues to tolerate them really well. By Friday she will be getting all her nutrition through breast milk and get her PICC line out. This is big too because whenever a preemie has a PICC line there is always a threat of infection. So far she has remained infection free and as soon as her PICC comes out her chances of staying infection free greatly increase.

Aaaaand she is up to 2 lb 7.5 ounces, SO close to 2.5 pounds! She got her lasix today so no telling if she'll gain tonight but I really really hope she hits the two and half pound mark. About the lasix, her labs today showed her potassium getting low again so her doctor started her on another medication. The way he explained it to me, which makes complete sense, is that if they keep replacing her potassium, which they have to do through IV fluids, it defeats the purpose. Essentially they are giving her lasix so that she can get rid of extra fluids but then they are giving it right back when they give her the potassium. So what he did is start her on a medication called aldactone. This is a potassium-sparing diuretic, meaning it helps her get rid of extra fluid while preventing the loss of potassium into her urine. Hoping that works for her but I really wish this PDA would just close already!!

Lastly, how about a Cameron photo dump? I took a bunch of pictures the other day and she was just looking so cute I had to post them :) Don't mind the stuff on and under her nose, it's a gentle dressing they put on to protect her fragile skin from the CPAP mask. And that's her feeding tube if you didn't know.

Big yawn!

Look at all that hair!!
And the tape on her arm is for her PICC line, coming off soon,
I can't wait!! One less cord, one less thing bugging her :)

"Mommy what are you doing back there??"

Love those eyes

Happy baby :D
Not sure if she's really smiling but she sure looks cute!

"Not so close Mom!"
(my flash was off by the way)

Such a perfect face!
I will say I think she's looking a heck of a lot like Daddy...

Tuesday, October 25, 2011

For Halloween. . .

...Cameron is going to be a giraffe! I couldn't not dress her up for her very first Halloween. I wasn't quite sure where on earth I was going to get a "costume" small enough for her. It's not like they sell costumes in stores for a two and a half pound baby. I found a woman on who crochets hats for preemies (and all other sizes too). Almost all the preemie sized hats I found are for babies around five pounds but she does custom sizes for babies anywhere from 1-6 pounds. I got Cameron's giraffe hat in the mail today and it's super cute! It looked pretty big and I thought it would be huge on Cam so we tried it on her while we were there today. It actually fit perfectly, and let me tell you it was beyond adorable so I'm really excited to have her wear it on Halloween! When we go to visit her that night we are going to take a bunch of pictures and all that good stuff. I can't wait!!
Cam's giraffe "costume"!!
As far as everything else, she kept having those same oxygen desaturation spells so they put her back on the lasix yesterday. They are going to keep her on it every other day and hopefully if her potassium gets low they will just supplement it without stopping the lasix. She definitely needs it and already she was much better tonight. They still haven't taken her off the BiPap and put her back on the regular CPAP yet but made some good progress today in decreasing her BiPap settings. She tolerated it well so I'm hoping really soon we'll get her back on the CPAP. It feels like it's going to take forever but I just can't wait until she doesn't have to be on either one and she doesn't have to wear her little mask anymore. For now her lungs just need time.

As I expected she did lose a little bit of weight last night after starting back on the diuretic. She was 2 lb 6.5 oz. Nothing drastic, and they didn't weigh her yet tonight and won't do so until 4 A.M. so I won't find out about it until tomorrow. Also, they measured her last night and she has grown about 3 cm (just over an inch) in length since birth! She is really getting bigger and it's starting to get easier to tell when I look at her. For a while it was hard for me to say because I see her everyday but now it's undeniable when I think about how tiny she was at birth.
And a picture of Josh kangarooing just because :)

Sunday, October 23, 2011

Day 30

It's day 30!! That means Cameron is a whole month old :D Tomorrow will be the start of her second month of life, it's crazy how fast time has gone. I thought it would drag and at times it feels like it does but wow, a whole month!

When they weighed her last night she had gained two ounces, weighing in at a whopping 2 lbs 7 oz! Now, she hasn't been on the lasix since Wednesday so she is probably starting to retain some fluid in her lungs again which could cause extra weight gain. She did start having some oxygen issues again last night and today so they are going to start her on a diuretic again. Not sure if it will be lasix or something different but she definitely needs it. I'm just glad that we know what is causing her oxygen desaturations, once she gets back on a diuretic it will clear up again. Anyways, that means that she may have some weight loss or she might slow down in gaining but they need to get that fluid out obviously. Also, they increased her breast milk feedings again today, we are getting closer and closer to her receiving all of her nutrition through breast milk in her tube! That will be a milestone for sure =)

Friday, October 21, 2011

She's a real person!!

I was really excited when I got the mail today and Cameron had a letter addressed directly to her (edited out personal info for internet privacy), I guess that makes it official that she's a real person. Her first letter :) Then I realized inside was her social security card so that REALLY makes it official! It reminds me of Dr. Seuss' Horton Hears a Who: "a person's a person no matter how small". I have a hard time truly feeling like a mother and I have to remind myself that I am just as much of a mother as other women with newborn babies just that I have to be a mother in a different way. Sometimes I don't feel like I have a real child because I can't take her home and hold her like a normal baby. It feels like this is all pretend, but her getting a letter and her social security card pretty much set it in stone, she's real and I'm not going to wake up one day from a crazy dream that I had a daughter. She's not going anywhere!

As for a NICU update, we had a really good visit with Cameron today. I kangarooed with her yesterday and Josh kangarooed with her today, she was on her best behavior through both sessions. She showed no signs of distress at all. We're getting to hold her more often and can probably start holding her every day! Kangaroo time is by far the best part of NICU life.

Her potassium was low today which is common for people taking lasix. They gave her more potassium through her IV feed and didn't give her today's dose of lasix. It has definitely done it's job already, she should be okay without it for a while. They are probably going to start her on a different diuretic sometime over the next couple of days if she needs it.

Her weight tonight was still 2 lbs 5 oz, same as last night. That's okay though, she had gained 3 ounces in two days so I'm fine with her staying the same for a day, I just don't want her to lose. Fingers crossed for another ounce tomorrow night!

New Blog!

I've decided to create a new blog since I'll be keeping it for a long time. I will continue to blog after Cameron is home and this is much more long-term and dynamic. I also find this site easier to navigate for visitors. In general I can do a lot more with it and will be able to share a lot more. Hope you enjoy it! And I will post an update later tonight.