Wednesday, November 19, 2008

Day 60 - Mama I'm Comin' Home

Did I just quote an Ozzy song? :)

Yes, it's true - we have a date for Ryan to come home! She'll be leaving with a monitor so we have training on that tommorow afternoon and I'll be rooming in with her Tomorrow night. If that all goes as planned I'll be bringing her home with me on Friday. Normally this would all be Heather's territory but given our current circumstances I'm filling in for her. Here's a video from last night (shot by Sam and Madi).

Sunday, November 16, 2008

Day 57 - No Tubes!

That's right, Ryan had her feeding tube removed today so she's all bottles now with no backup system in place. She's been growing like crazy too, weighing in at 5 lbs. 4.5 oz. It's amazing how much she has changed. Here are a couple of pictures from tonight...

And a little reminder of where she started!

Saturday, November 15, 2008

Day 56 - Busy Week

This has been a really busy week for us with Heather having to make the trek down to Emory University Hospital several times. I've had a hard time getting updates posted so you'll have to forgive me. Ryan is still doing really well. She weighed in last night at 5 lbs. 1.5 oz! They obviously can't give us a time frame on when she'll be coming home but it appears that there is a reasonable chance she will be cut loose by the end of next week. My mom is coming back to town tonight so that should free up some of my time for doing important stuff like posting on the blog ;).

This video is from last Sunday, Nov 9th.

Thursday, November 6, 2008

Day 47 - Are We There Yet?

So, could day 47 bring better news than day 46? Perhaps. Ryan is now 4 lbs. 10 oz.! That's not the news but it is a great sign. The real news is right here inside this video. Make sure you watch it BEFORE you go on to read the rest of this or it will ruin the fun...

Okay, so little miss "on my own agenda" has had a history of just deciding out of the blue that she's ready to do something. For example, one day she was on her air (and needed it) and the next day she went without it and has been going along perfectly ever since. It seems that today is the day she decided that she's ready to drink from a bottle. Literally 24 hours earlier they were concerned about her reflux and how long it might take before she could actually hold an entire bottle in without ralphing it back up. Those are some powerful prayers you people! We went to see her today and she had already had 2 bottles without any problems and Heather fed her a third while we were there (she eats 35cc every 3 hours). She's had two since that one and not one spit-up today. That might explain the 4 oz. weight gain. Her nurse told us that given her sudden desire/willingness to eat that we should start looking for our car seat so that we can bring it in and get it approved. Yes, they do have to check it and approve it before they will let her leave. I don't know that it necessarily moves her go home time frame up any, but I would think that it makes it much more certain that she'll be spending Thanksgiving with us. So it begs the question... What constitutes a miracle? ... and ... Are we there yet?

Wednesday, November 5, 2008

Day 46 - Short Timer?

Okay, a quick update...

We saw Ryan today but I forgot the cameras at home so I don't have any new pics. While we were there we talked to one of her doctors and during our discussion she made the comment that Ryan should be ready to come home in TWO to THREE WEEKS! That's before Thanksgiving people! She is doing really well. Her one hang up is that she's still having some reflux that needs to get under control before she comes home. So, if you remember to, please pray that she'll get over that and will be able to keep her food down the way she is supposed to.

Oh, and as promised, I checked on her length and she is now 16 1/2 inches and still floating around 4 lbs. 6 oz.

Saturday, November 1, 2008

Day 42 - 4 & 4

Lots of updates coming in today. Ryan weighed in at 4 lbs. 4 oz. last night! She's been gaining weight steadily lately which is awesome. You'll also notice in the video that her nasal cannula is gone! They took her off of it yesterday morning and she's been doing great. It's nice to see her with just the little feeding tube and hopefully that will be going away soon as well. Her nurse called this evening just before she left and said that they moved her out into the big room. That's actually really good news because the next move she makes will be HOME! That may also indicate that she's going to be starting up the bottle feeding before long. We'll keep our fingers crossed.

Wednesday, October 29, 2008

Day 39 - Two In A Row

Look at me go! 2 days in a row now. Heather had her thyroid surgery today (everything went great) so I went down and hung out with the baby for a little bit.

Tuesday, October 28, 2008

Day 38 - Bad Daddy

Okay, I've been REALLY bad about the updates this past week. I can't explain it, just been busy. My Mom is about to go crazy though so I thought I'd better get an update on here. Ryan has been growing like a weed lately. She's nearly 4 lbs. now! 3lbs. 14.5 oz to be exact. I talked to the nurse when I was in last night and she said she expected them to try and start feeding her from a bottle soon, possibly in the next week. She's starting to act like she wants to suck (while eating) so they've been giving her a pacifier along with her feedings to try and satisfy it. They probably would have given it a shot already but she still has a little bit of reflux so they're trying to hold off as long as possible. Thankfully we haven't had any big surprises from her so all I really get to do is post pictures and tell you how much she weighs. I hope it stays that way. Here are some pictures...newest on top...

Brooke saying "Hi" to her baby sister (Day 35)

Me and my girls! I'm in a little bit of shock, hence the scared stupid look on my face. (Day 35)

Brooke doing her scrub. We have to do this each time we go into the NICU. 2 Minutes each, finger tips to elbows with a surgical scrubber. Gotta keep those babies healthy!

A Big Girl Bed! Ryan is wearing clothes now and sleeping in a regular bed. No added heat other than 15 or 20 blankets and a hat. :)

Ryan laying on Heather - a good size reference - That's a regular newborn diaper swallowing her up (from Day 33)

(Day 33)

Just snoozing away (from last wed Day 32)

Tuesday, October 21, 2008

Day 31 - 1 MONTH!

Today Ryan is one month old! She weighed in at 3 lbs. 6.7 oz. tonight so she is progressing really well. They have been trying like crazy to get her off of the air but she can only maintain her breathing for a few hours before she starts desaturating and they have to put it back on. They have cut the flow in half so hopefully she'll get the hang of it and we'll have a mostly untethered baby soon.

It's hard to believe that it's been a month (well, 5 weeks really) since this all began. Time has REALLY flown by for us for obvious reasons. Hopefully the next 5 will go by just as quickly and we'll be close to bringing Ryan home!

I'm kind of a slow poke with updates now that I'm not hanging out in a hospital room everyday. Sorry about that. There are 3 new videos below that you can check out.

Monday, October 20, 2008

Day 30 - Big As A Bass

Ryan is 3 lbs. 5 oz. today! That makes her as big as most of these bass, which is sayin' something. Although I'm not sure what. My boss did tell me that I should take up fishing with everything that we've had going on. Maybe it's just on my mind. Anyway, she's been gaining about an ounce a day for the last several days and is looking great. She's really starting to fill out as you will see.

I snapped this quick video so you can see how her color has changed and she doesn't look quite so scrawny now.

Friday, October 17, 2008

Day 27 - Just A Quick Video

Not much to report today, just a quick video of the baby (in her new hat) and mom.

Tuesday, October 14, 2008

Day 24 - I Cheated

I had a little bit of catching up to do on the posts so there are a couple of new ones down there with pictures and video. Heather took her Mom down to meet the baby earlier today but they left the cameras in the car so I don't have any pictures to post. Good news though, Ryan made it to 3lbs. for the first time! The extra food is definitely helping but she's having a little bit of reflux so they are feeding her very slowly and basically non-stop for now. They also gave her a little bit of blood to help bring up her red cell count. She got the blood from her dear old Dad this time. I had done a directed donation last week so since they finally had my blood on hand they gave her some just as a precaution.

Monday, October 13, 2008

Day 23 - Room With A View

Ryan has a new room. She's old enough now so she can be in a room with windows. It looks out over the construction on the new main entrance to the hospital but it's nice to have some natural light in there. She still hanging around the same weight but it did creep up a little bit. She was 2 lbs. 13.7 oz. and is still getting her max on food. They were able to remove her PICC Line yesterday so she's only attached to her oxygen and the feeding tube now. Other than that not much has changed and we kind of like it that way. No more surprises please.

Saturday, October 11, 2008

Day 21 - Bye Nanna

My Mom had to head back home today so we went by the hospital to see the baby before she left. Ryan is 2 lb. 13 oz. and is now at her max feeding (23 ml). She seems to be tolerating her food well so they will probably be taking her PICC line out soon. They were also planning on moving her to a new room this afternoon or this evening. She's "big" now so she gets to move to a room with a window. Here is a video from today. Toward the end of it you'll see Madi's hand pop in. It will give you a better idea of how small Ryan is when you see how Madi's little hand dwarfs her.

Thursday, October 9, 2008

Day 19 - Big Girl Bed

Ryan got herself a new bed. Apparently she was getting too big for the Giraffe Bed so they have moved her up to the Ohio IC. I took a picture of it but it was way out of focus as you will see.

She weighed in today at 2 lbs. 12 oz. and is getting 18ml with each feeding. 23ml is her max so if she gets to that point and is still tolerating her feedings well then they will remove her PICC Line and go only on her food. That could happen within the next few days. Oh yeah, she also graduated to a bigger pacifier which apparently she loves even though it is almost the same size as her face.

Oh, and Ryan wanted to say "Happy Halloween" to everyone too.

Tuesday, October 7, 2008

Day 17 - Heading Home

Heather was finally paroled from the hospital today so we went down to see Ryan before we left. Not much has changed since we were down there last night other than they are still bumping her food up every 12 hours. It's a good sign because it means she's digesting well and of course she should continue to gain weight. Our friend Julie made a little hat for her so that she won't have to wear that giant yellow one again (hopefully). She's wearing it in the video today. Oh, and if you're wondering what the red light is on her foot (from the other videos), it's her O2 sensor. I'm not sure if it's pre-programmed to turn on her check engine light at 50,000 miles but I'll let you know.

Monday, October 6, 2008

Day 16 - What Happened to Day 15?

I did go down and see Ryan yesterday but it was kind of late so I didn't want to bug her. She was snoozing away quietly so I let her sleep. Today however, Heather and I went down and she was WIDE awake! She is still doing well with her feedings and they continue to increase her 1cc every 12 hours. She has been gaining weight again and as of tonight was beyond her birth weight. She weighed in today at a hefty 2 lbs. 11 oz.! Before we know it she'll be the 20 lb. baby that people dream about, right Reba?!?! There are a couple of good videos here where you get to see her doing more than just peeking out of the corner of her eye.

Saturday, October 4, 2008

Day 14 - Caption This!

My brother had a pretty good idea so I thought I'd run with it. Post a caption to this photo (in the comments) and we can all have a good laugh. Post as often as you like.

Day 14 - Moms Turn

Well, the baby is still sitting tight at 2 lbs. 7 oz., nothing has changed with her air and they are increasing her feeding to 7ml. The BIG news of the day was that Heather finally got to go down and hold the baby for the first time. The only hat the nurse could find was a giant yellow one. It served the purpose but kind of made the baby look like that one guy on the Fat Albert cartoons. Anyway, it was really cool and I was glad that Mom and baby could finally get some up close time.

Friday, October 3, 2008

Day 13 - A Good Long Look

Not much has changed with Ryan. It's the usual air-on air-off for now. That will probably go on for a while as she grows and gets better about her breathing. She's also staying steady at 2 lbs. 7 oz. but they did increase her food intake overnight and she's tolerating it well. The video I got isn't anything earth shattering but everyone seems to like them so I thought I'd post a good long one.

Thursday, October 2, 2008

Day 12 - Ready for the Road

Ryan is doing great today. She's off the nasal cannula again and hasn't missed a breath so far. They increased her feedings to 3ml every 3 hours and if she's still tolerating it well then they will bump it up to 4ml overnight tonight. She weighed in at 2 lb. 7 oz. today so there was a tiny weight gain. My mom came into town last night and was able to come to the hospital today for a short visit. I feel sure it won't be her last. :)

I have no good explanation for this picture other than perhaps she's seen me drive.

Wednesday, October 1, 2008

Day 11 - Say Cheese

Ryan was either in a really good mood today or really gassy. She was smiling an awful lot. I'm thinking gassy. They got back to feeding her again. She's getting 2ml of formula every three hours and still holding at 2 lb. 6 oz. The nasal cannula is still on to force a little bit of air into her lungs and keep that apnea under control.

I took a quick screen capture of Ryan's toes sitting on the end of my finger. As you can see, all five of them fit right there.

While I was visiting I was able to hold her for the first time. The nurse snapped a quick video of it for me.

Tuesday, September 30, 2008

Day 10 - Sister Act 2

Before I start I want to say "Hi" to the 6th graders at Lamar Middle School in Flower Mound, Tx. Thanks for checking in on Ryan! We'd love to hear from you so feel free to leave us a comment.

Okay, so the baby is eating again today. She's still on the nasal cannula because her apnea kept setting off the breathing alarm this morning (they had taken it off). I brought the girls down again so they could see her and of course they love it. Brooke keeps telling me that she wants to take the baby home. I don't have an update on Ryan's weight cause I forgot to ask.

Here is a quick video of Madi and Brooke singing to her and at the end we go inside the Omni Bed.

Monday, September 29, 2008

Day 9 - Baby Meltdown

Okay, soooo day 9. She's back up to 2 lbs. 6 oz. but she she didn't digest her afternoon feeding so she's NPO until tomorrow morning when they will try feeding her again. They also put the Nasal Cannula back on to give her a little break. She's still just getting room air but it makes breathing a little easier. She also had a bit of a meltdown while I was there. Apparently she did not approve of the nurse trying to help her out.

Sunday, September 28, 2008

Day 8 - n02

Well, Ryan hit her one week mark today. She weighs 2 lbs. 3 oz so just like every other newborn she's dropped a little weight. She should start gaining it back anytime now. I went down to see her and a few things have changed. She no longer has any oxygen on so it's straight room air for her now. They had to take the stomach tube out of her mouth and put it in through her nose because she kept grabbing it and trying to pull it out. Since she's at her week mark they put in a PICC Line and will be removing the last tube from her stomach so that it can close up.

Her bowel sounds are starting to improve so they are doubling her feedings to 4 per day which is great news. I also got to change a diaper while I was down there. You'll see in the video that the first round of decorations are up. I told them that we may well wallpaper the place by the time she goes home and they didn't act like that would be a problem.

Saturday, September 27, 2008

Day 7 - Sister Act

We finally had the girls come down today to see their new baby sister. They were REALLY excited to see her as you can imagine. Brooke still hadn't quite grasped the idea that she was here already so it was good for her to see that she wasn't inside mommy anymore.

As far as the baby goes, they didn't make any major changes in her setup. She's still breathing room air and giving her nurses lots of attitude which they say is a good sign.

Day 6 - Eyes Wide Open

Okay, not exactly WIDE open, but open. I was talking to her and she kept opening her eyes to look around. I was having fun so the video runs a bit long. She is doing great. They removed her arterial today which is a tube from the umbilical cord that they continue to use for giving her blood if needed. She still has the one in her that they use to feed her vitamins and lipids. Once her bowels start to calm down they'll be able to start giving her food through the tube in her mouth/stomach.

I also got this video of her having a little fit. We made her mad the other day but you couldn't hear anything because of the breathing tube. Well not anymore. I promise I did nothing to instigate it.

I'm cheating a little on the post date and time on this one to keep things organized.

Thursday, September 25, 2008

Day 5 - Blue Light Special

Ryan got an upgrade today. The light that they've been using to help her with her jaundice got switched out for a newer, more high tech LED version. That's why the video looks kinda blue and her color looks a little odd.

She's doing great on the Bubble CPAP and is still getting antibiotics but they think that will only last a couple more days since all of her blood work is coming back good. Tomorrow she'll have a brain scan done which is a normal part of the routine in the NICU. Hopefully those results will come back normal. There's never a shortage of tests with potentially scary results but so far she's passed with flying colors so that takes some of the edge off.

On a lighter note, here are some observations from the NICU staff...
- She likes her pacifier
- She hates having her diaper changed
- According to the nurse, you can tell how feisty a baby is by how many pacifiers are in their bed. Ryan already has two in there so if my math is correct, she should have around 40 by the time she comes home.
- And finally, here is a comparison of a regular newborn diaper and the diapers Ryan is wearing right now.

Wednesday, September 24, 2008

Day 4 - Look Ma, No Chest Tube

Well, as promised, the chest tube has been removed. The baby now has a Bubble CPAP in her nose that is feeding her slightly humid air. The stuffed hand you see in the picture is trying to hold her mouth closed so that the system works the best it possibly can. The nurse said that Ryan figured out pretty quickly that if she opened her mouth wide it took some of the pressure off and was more comfortable for her. It seems she's developing an attitude right along with her lungs.

Tuesday, September 23, 2008

Day 3 - Meet your Mommy

Well, today Heather was finally able to get down to the NICU to meet the baby. We dropped the side of the bed down so that she could reach her from her wheel chair and as you will see in the video, the baby wasn't exactly thrilled with us letting out all of her warm air . She'll get over it.

They didn't take the breathing tube out today but they will tomorrow if she does okay overnight. Apparently preemies can get a little too comfortable and forget to breathe so right now the tube is just adding a breath in if she skips one. The technology is amazing. She's mostly breathing on her own though and she's getting no supplemental oxygen, just what you'd get with normal room air. She's also off the dopamine which they had been using to regulate her blood pressure. Once she's breathing okay their attention turns to the heart to make sure that the Ductus Arteriosis closes off. If it doesn't, they will give her medication to try and get it to close. If that doesn't work they have to do surgery to clip it and tie it off . Her doctor said that hers is very small right now so she hopes it will take care of itself. Oh, and sorry Nanna Jones, no red hair under that hat...

Monday, September 22, 2008

Day 2 - Size

This should give you a little bit of and idea of how big the baby is. My wedding ring is on her hand and pretty much covers it. We were going to put it on her wrist but her fingers are still a little swollen from the fluids they were giving her. You can also see that the nurses finger is about the same size as Ryan's arm.

Day 2 - Noon

Took this at around noon today. The latest news is on the video.

Sunday, September 21, 2008

Day 1 - Evening

Here is a video I took this evening. She was breathing okay when she was born but they had to go ahead and put in a chest tube cause she started having some trouble (not unexpected). They gave her medication to help her lungs expand and she's getting oxygen and blood pressure medication to help keep her regulated. It looks a little scary to see her plugged into 6 different machines but it's helping her get better so we'll take it. Thank goodness for modern medicine!

RJ's Blog

The particulars: 9/21/08 2:04 pm 2.9 lbs/14 1/2 in

Well, I figured that since our world has just taken a wildly unexpected turn into preemie baby land that I would branch off from our other blog and post all of the updates about Ryan on her own site . We know that everyone is eager to see her and hear how she is doing and it gets really hard to keep up with who knows what so this will be a great place to post videos, pictures and updates on her progress. If you have a question , go ahead and post it in the comments and we'll do our best to fill in the blanks for you.

We wanted to say thank you to everyone for all of their thoughts and prayers. We're really blessed to have great friends and a great ward family backing us up. There's no way we would be able to get through this without you. We appreciate it more than you will ever know.