Doctor's appointment goes well

Daddy here:

Well, Caydence had her second doctor's appointment today and all went well. She was weighed at the doctor and over the last 2 weeks she has gained 9 oz. which is exactly where she needs to be according to the doctor, so we're happy. I was expecting more but I guess when you do the math, that kind of gain would be equal to me gaining roughly 25 pounds in two weeks so actually I'm impressed. Otherwise, all went well and we had a few more questions answered, specifically about her feeding schedule. We asked about spreading it out more and we were able to rearrange her night time feedings so that there will be a 4 hour window in the early morning hours. All I have to say is wow, what will I do with all of that extra time? Maybe I could write a novel or something. The doctor said we have to make small changes and that she would alter the schedule again in a couple of weeks because we don't want to shock her with the changes. I guess you could say that we're taking, baby steps? Yeah, I know, that was bad but it's 3:30 in the morning, you can't expect a lot.

The other news to report is that we had our first visit with the "Birth to 3" group yesterday. "Birth to 3" is a program that is designed to aid children with disabilities in catching up to the rest of their age group by the time school were to start. It's an awesome program and the research shows that children in "Birth to 3" are leaps and bounds ahead of children with disabilities that don't enter the program so we're excited about this too. The group comes in 2-3 times to evaluate where they feel Caydence is and then they make a plan as to where they feel she is and what needs she may have. They provide Physical Therapists, Speech Therapists, Occupational Therapists and other help as Caydence may need it. I'm so glad that this program exists and that we can provide it to Caydence. Otherwise we would be learning it all from scratch and why should we reinvent the wheel if it already exists.

Anyway, we're all doing well and have had a few very important days as of late. I guess I'm going to leave it at that. Take care and I'm sure we'll be posting again soon.


Josh

6 Weeks Already?!?!?

A couple days ago Caydence turned 6 weeks old! Jeez, time sure does fly :) I'm sure she is getting bigger every day, it's just hard to tell since I am always with her. This coming Monday a lady from the Birth to Three program is coming to our house for Caydence's initial evaluation. We'll have to let you know how it goes.

Tuesday she has another check-up with her Pediatrician. We can't wait to see how much weight she's gained. We still don't know when she is going to have her heart surgery. Last time we saw her Cardiologist he was still saying 6 months to a year. We see him again in mid August. Hopefully then he will be able to give us a better estimate.

Right now her doctor's are recommending she not go to daycare until after her surgery. It would put her at a higher risk to get sick and getting sick before her surgery would not be a good thing! Her daycare is also not comfortable with her feeding tube, so right now I am trying to work something out with my job. Either working from home somehow or taking a leave of absence.

If I end of having to quit my job, besides the lack of money...Caydence would most likely need to change all her doctors because she would be under Josh's insurance and they don't cover her current doctors. We really like her doctor's so it would be a shame to switch. But we'll have to see how everything pans out. Wish us luck. it's a sticky situation :P

Here are some pics!

Sitting in her boppy -



Sleeping in her Pack N' Play Bassinet. (No, that isn't her foot... we putting socks on her hands so she doesn't pull out her feeding tube) Hehe! -



Admiring the mobile on her lamby swing -




Lastly I would like to say congratulations to my friend Melissa. She gave birth to her baby girl Olivia today! :) She was 8 lbs and 19 inches long! Hopefully we can get a pic of Olivia and Caydence together in the near future :)

Caydee's Schedule

1:30 a.m. Feeding Time

1:30 a.m. Sodium .25mL

4:30 a.m. Feeding Time

6:00 a.m. Captopril .4mL

7:30 a.m. Check heart rate

7:30 a.m. Digoxin .2mL

7:30 a.m. Lasix .62 mL

7:40 a.m. Feeding Time

10:30 a.m. Vitamins 1mL

10:30 a.m. Feeding Time

1:40 p.m. Captopril .4mL

1:50 p.m. Feeding Time

1:50 p.m. Sodium .25mL

4:30 p.m. Feeding Time

7:30 p.m. Check heart rate

7:30 p.m. Digoxin .2mL

7:30 p.m. Lasix .62 mL

7:40 p.m. Feeding Time

10:00 p.m. Captopril .4mL

10:30 p.m. Feeding Time

The First Week

Well, it's now been a week since we took her home from the NICU and here are some things we've learned...

* Babies are very loud sleepers.

* Babies can cry very severely when they have gas.

* Being pooped on, peed on, and spit up on kinda of sucks.

* Babies go through multiple outfits a day due to these bodily fluids.

* Sleeping is a sacred luxury that many people take for granted.

* Babies are very slippery when wet.

* You should always make sure you have enough wipes close by when you are about to change a diaper, ya never know how many you'll need.

* When giving babies medication, insert the syringe as far back into their cheek as possible or else they will spit it out.

* Babies can be very fussy eaters.

* Tummy time can be very rewarding.

Josh and I under estimated the amount of sleep deprivation that happens when caring for a new baby, but we are trying our best to adjust. Overall, I think our first weeks went great and we are very happy she is home with us!

Here are some pictures...

What night is this now?

Daddy here:

I'm sitting here, 2:30am on Wednesday morning trying to stay awake so I figured I would post a little update. Sorry about the missing update yesterday but neither one of us were up to typing anything lastnight, being sleep deprived and all. I wasn't aware of how much sleep we would lose in this transition but now I see that we better get used to it. It's kind of funny when a big deal now is sleeping 5 hours strait, crazy.

Anyway, Caydence is doing well and gaining weight like mad. She had her first doctor's appointment yesterday and between Saturday afternoon and Monday morning she gained 4 ounces. Other then that, it's been pretty standard around here, feeding, meds, and little sleep. The only other event of interest was the fact that we gave Caydence her first bath this evening. She seemed to do alright during that but it's a work in progress because it didn't go nearly as smoothly as the baths in the hospital.

Otherwise, not much else to report. Hopefully we have a little more energy and can post some pictures today. Until then, take care and wish us luck.

Night 2 in Progress...

Hey Everybody! Thanks for all your support and encouragement.

Jenny here... It is about 12:30 am. I got an hour or two of sleep yesterday afternoon. Josh was running on fumes from his two hours last night, so I sent him to bed at 8:30, but I don't know how much longer I can stay awake. Right now Caydence is sleeping away in her lamby swing. She seems to prefer it more than her cradle.

She has her first appointment with her pediatrician at 10:30 am today. We'll have to let you know how it goes. We are both very happy Caydence is at home now. But I think we under estimated the whole not sleeping thing...

I'm sure it will get better when we don't have to feed her every 3 hours. Hopefully I'll get more sleep tonight that last night :) We'll see...

What a night!!!

Daddy here:

Well, we made it through the first night and everyone is still alive, or in mommy and daddy's case, at least in varing degrees of alive. I don't think either one of us slept more then 2 hours the whole night. Between the feedings spaced 3 hours apart, or the meds that she has to have scattered throughout the day, or the diapers that were absolutely the worst that I've seen so far(I personally think she held onto the worst of it so she could break us in on the first night, I can't confirm that but it's my opinion) we could sleep. And if by some chance we did find the bed, she was so loud with her breathing and noises that we were constantly thinking she was in trouble and came running.

Just out of curiousity, how long can a person go without sleep? If you don't know, I'm sure that I'll have the oppertunity to find out.

But all that aside, we're still so glad that she's home. The daily trips to the hospital were brutual. After all the time that was taken out of the day, with commuting and various other things you maybe saw her half of the time you invested. This way is much better, just a little more tiring then I expected. We also have to give her a bath sometime soon but we'll see if that happens today.

Anyway, I thought I would quickly give some updates of how it's going and now I have to go and change a diaper or something. Take care and I'll make sure to keep you all in the loop.

WOW!! Today is the day!

So, it's daddy here and neither one of us can believe that today has finally shown up. It's been a month since Caydence was born and she hasn't stepped one foot inside of our house but that's all going to change in a matter of hours.

I'm a little late to make yesterday's post but I'll give you an update as to what happened anyway, that way mommy can't get mad about me not posting like I said I would. :) Well, yesterday they continued to get us ready to take her home today, covering her medications, how to administer them, and various other things while I was at work. But they made sure to save the worst for last, just so I would be there. The nurses wanted to see daddy put the feeding tube in again, just to make sure I was comfortable with it. (Ok, seriously, if anyone ever gets comfortable with this something is wrong with you.) But daddy did it, and I got it in on the first time, which is good I guess. But I still get torn apart on the inside watching her cry and squirm when we do this and nothing that anyone says will make it any easier. But we both know it has to be done so we're ready to do what is needed. And that pretty much takes care of yesterday, one traumatic experience and a lot of preparing for today.

We've been running around the last couple of nights, making arrangements, cleaning house, washing her clothes, putting together furniture and other various tasks that we felt were needed before Caydence shows up here. We can't have her thinking the home that we live in is worse off then the hospital that she's being discharged from. Anyway, I'm sure that one of us will post tonight to give everyone an update as to how it's going so until then, take care and wish us good luck.

The Date is Set!

Caydence will finally be coming Saturday!!!!! YAY!!!!

I brought her carseat in today and tonight they are going to put her in it for an hour to make sure she's tolerates the position and everything.

Tomorrow I gotta bring a cooler so I can take home the 3 bins of frozen milk they got in the freezer. Josh is going to get more practice putting in a feeding tube and we gotta watch a video on infant CPR.

Josh and I are working hard to get the house ready for her; washing lotsa of baby clothes, boiling nipples and pacifiers, and all sorts of stuff.

Happy 4 Week Birthday!

Caydence is 4 weeks old today!!! Yippee!!! And today the nurses told us that Caydence should be able to come home in a few days (still no exact date). They increased her Digoxin last night and they wanna watch her for a couple days to make sure she is still stable on her meds, but after that she should be able to come home.

They also told us they want us to feel comfortable putting in her feeding tube before they send her home. I had put it in twice before and Josh had done it once. So today I did it again and this time I did it without the nurses help! I am actually very proud of myself for doing it so well. I think I am fairly comfortable with it now; and she didn't cry this time either, but you could tell she was uncomfortable.

Tomorrow they want us to bring in her car seat so they can do a car seat trial with her. I guess what they do is put her in the car seat for an hour while she is hooked up to the monitors and make sure the seat position doesn't affect her heart rate or oxygen intake. If it does, then they need to send her home in a car bed in which she can lay down while in transport.

Now Josh and I are frantically running around trying to get the house ready for her. We can't wait til she's home!

Happy Girl

Caydence is now up to 5 lbs 9.9 oz! Last night she took 2 whole bottles. She must be a night owl because she only takes about 1/2 her bottles during the day. Her nurses the past couple days seem to think she is strong enough to come home. But it's up to the doctor on when they release her. Our nurse today said they only give parents about 24 hours notice before sending babies home. So it could be any day now!

SCARY!!!!!

Of course Josh and I can't wait for her to come home. We are just so nervous! She is so small and because of her heart defect we have to closely monitor her respiratory rate, heart rate, and temperature. We just don't want anything bad to happen to her

It will be such a relief once her surgery is over and her heart is all fixed up. They are still saying 6 months to a year. Right now she sleeps all the time because she just doesn't have enough energy. We can't wait for our sleeping beauty to wake up :)

She likes to smile in her sleep, so here is a pic of her grinning sound asleep after her 4:30 pm feeding today.

What a dirty little girl!!

Caydence really knows how to make the day interesting for her mommy and me. The day started out normal enough; getting her temperature, checking her weight and attempting to feed her. Caydence put on another ounce today so that means she has officially gained a little more then a pound since being born which is very good. But she still needs the majority of her food to be passed down her feeding tube which is unfortunate but I guess that's what it's there for. But this isn't where the day got interesting, it was when we tried to give her a bath.

While getting her ready for her bath, we had to take her diaper off and what a package of surprises she had for us. And then she felt it necessary to add to those surprises after we had her diaper off.(Ok, if you haven't figured out what the "surprises" are yet, there are only two things that you will find in a dirty diaper, think about it!!) Ok, so she finally finishes and we start bathing her in the baby tub that the nurses had brought in which had a nice pad in it so she wouldn't slide around and we didn't have to worry about her going under the water. Well, after we were a minute or so into the bath Caydence felt required to "surprise" the tub. To say the least we couldn't continue with her bath as it was no longer going to clean her, so we had to finish with a sponge bath.


But all in all, we had a lot of fun with our daughter and we learned more today about taking care of her when she comes home. We hope that she gets to come soon so we can enjoy having our daughter in our own home but we don't want her to come home before she's ready.

Our Little Firecracker

When we got to the hospital today, the nurse told us that she took her whole bottle at her 10:30 feeding! She hasn't done that since the first couple days after she was born. So that is very exciting news. Especially since they increased her to 42 ml per feeding.

A little while ago our friends Kris and Louie bought Caydence a little 4th of July t-shirt and socks, so I took it to the hospital today to have her try them on.


I'm sure the socks will fit her better next year, but they looked so cute on her!



Check out all that hair! It's really growing in the back and it is so so soft!





That's all for today :)

July 3rd Update

I have found that Josh is so much better at blogging than I am. He has a way about writing that is far superior to my own.

Anyways, Caydence had her first bath from Mommy today. Unfortunately, I don't have any pictures of this event. But I think she really liked the warm water. She never fusses or anything during her baths she just seems to enjoy herself. My friend Nichole was up visiting, so she held Caydence in the tub, while I washed her up.

She was really wide awake the whole time and took 25 ml during her 1:30 feeding. Then she was out like a light. At 4:30 she was a little more tired and only took about 15 ml. Her weight is up even more today - 5 lbs 6.6 oz. So that is good!

Her nurse said they might up her Captopril a little more to help her along. Here is a picture of her sleeping after her 4:30 feeding. I really need to get more pictures of her with her eyes open! But she's so sleepy all the time :)

Daddy's heart is hurting after today

First of all, Caydence is doing well today. She gained more weight today and she ate 17 ml for Jenny at her first feeding. And when I arrived at her second feeding she was awake with two of the most beautiful eyes that I've ever seen. I can't explain how those eyes just make me melt. But it's here that the day took a bad turn for me. The nurse made daddy put the feeding tube in this afternoon.

That was one of the most difficult things I've ever had to do. The look on her face while I tried to get that tube to go into her nose just ripped me apart on the inside. For her to go from this bright eyed little baby to crying and tears was tough. But I did get it in and I know that she needs this feeding tube to survive, not that this makes it any easier to see my daughter cry.


But when the tube was all said and done, I was able to feed and hold Caydence which is nice and she slept away the time with me. She's so cute while she sleeps; to be quite honest I think she's cute pretty much all the time,(although, I may have a small biased opinion on the subject). Anyway, she's doing well, even after my eventful start to the feeding. Thanks for reading and stay tuned for the next update.


Josh

July 1st Update

Happy 3 Week Birthday to Caydence!

She was doing really good today. She took 21 ml for me at 1:30 and 25 ml for Josh at 4:30. The nurse told me that Caydee poo'd on the night nurse when she was changing her last night. Silly Girl!

Nothing much to report on today, just plugging along.