Sunday, August 30, 2009

Due date, and many other milestones

Friday night, we got to help give Riley her first bath. You can tell from the photo below she did not enjoy it, but she was starting to stink so it was necessary. They have given her a few small sponge baths before, since now that she is chubby her "folds" get dirty and stinky. Pam helped wipe her down with a wet soapy cloth, while I helped hold her. Overall, I thought she handled it pretty well - didn't seem to de-sat very much, so despite her fussiness she responded well to it.

Last week we officially picked Riley's Godparents - my brother Michael and sister Jill will serve in that honor. Hope to get her baptized sometime in October, depending on when she finally comes home.

Saturday was Riley's due date. Really had hoped to have her home by now, but as I've said before Riley likes to do things on her own schedule - not what we or the doctor's say. She also hit the 8 pound mark last night. Looking at her now, and some of the new babies arriving in the NICU, its hard to remember when she was down below the 3lb mark...she has come such a long way. Early Saturday morning, they also decided to attempt to take her off the C-PAP for the 4th only lasted from about 2:30am to 6:00am. It seemed to me that they rushed it a little bit, and were doing some other procedures at the same time, plus her phenobarb levels were a little low so I was surprised they did all that at once. So I guess this week we will shoot for #5 and hope she finally takes to the cannulas. Her O2 levels still are doing very well - most of the day around 21-24%. The past few days she's been pretty fussy when I'm holding her...hoping that's more due to gas (she's had a lot of it lately) than anything else. But even when she's fussy, she doesn't de-sat much so that's a good sign that she is more stable.

Here's a picture of her getting the bath on Friday. She was one mad little girl!

Sleeping in Pam's arms, it looked like she was saying her prayers.

After putting her back in bed, she tends to get fussy (obviously prefers our arms to the bed). But somehow Mommy has had the right touch to calm her down. Here they are staring into each other's eyes...

Thursday, August 27, 2009

Third time...not a charm

Sure enough, Tuesday they decided to take Riley off the C-PAP for the third time. She did great all day again, but around 10pm she had some A/B fits and basically got tired of breathing again so they had to put her back on. Poor thing, guess we'll try again in a few days. Yesterday, they went ahead and turned the C-PAP down to "3", which is the lowest setting. In the past, they haven't gone below 4 before taking her off. Hope this helps! O2 needs are still staying in the 21-25% range. She is really enjoying being held, and that seems to be her lowest O2 settings of the day is when she is in Mommy or Daddy's arms. Pam has been trying to do skin-to-skin just about every day on her lunch break, which will hopefully help Riley as well.

Her weight is still slowly going up, tonight was at 3555g, which is 7lb 13oz! Not too far away from the 8lb mark. Her feedings are up to 67mL, which the feeding tube syringes don't go past 60mL, so they have to split it up into two. In talking with a few of the nurses this afternoon, we are pretty sure she is the oldest baby in the unit now - which holds around 40 babies in the NICU and 20 in the Special Care Nursery. It's about time for her to come home, wouldn't you say? This Saturday (29th) is her original due date, so she hit 12 weeks old on Tuesday of this week.

They decided to get a consult from an ENT (Ear, Nose, and Throat) doctor today - there was some concern based on the way she was squirming and arching her back, and the fact that she still is making very little noise when she cries, combined with the fact that she just isn't doing well off the C-PAP. He came in tonight while Pam was in there, I had been in earlier in the evening and was already gone when he showed up. After examining her, and scoping her nose and throat, he determined there isn't any reason that he could find why she should have trouble breathing. However, her vocal cords are under-developed (condition is called Lonyngomolacia??). We are assuming this is due to the fact that she was on the ventilator for almost two months - a crucial time in her physical development, and the ventilator ET tube was restricting her vocal cords from functioning the entire time. He said this will correct itself, and should be caught up by the time she is 3 years old. Not sure yet if this means she will be a quiet crier the whole time, or if she'll have trouble talking later on. It seemed like he wasn't concerned about any long-term effects.

Here's a photo from Tuesday, during her 12 hour stint on the nasal cannulas. So great to be able to see so much of her face. You can see the irritation on her forehead from the tape from the C-PAP tubes, her skin is still a little sensitive.

From last night while I held her. She is always very calm when we hold her, she definitely knows her Mommy and Daddy and prefers us to laying in the bed.

She was very alert and awake this afternoon when Pam and her mom we visiting, looking all around and very interested in what Mommy was doing. And of course, since she was awake she was very squirmy, which made it hard to hold her and keep her calm.

Monday, August 24, 2009


I've decided to give Riley a new nickname...Chubs. She just keeps gaining so much weight! Up over 7lb 8oz tonight, wow! Just looking at her, I can't believe how big she is after looking over old pictures the past few days. O2 has been doing really well, still around 21-25% the majority of the time. She hasn't had any A/B episodes in over 48 hours now (knock on wood). Hoping to attempt to get off the C-PAP for the third time tomorrow or Wednesday. This weekend she received another blood transfusion (third one now). Her red blood cell count was low, and she was pretty anemic - they said this might have been contributing to her trouble breathing and struggle keeping strength when she was on the nasal cannulas. So everyone keep your fingers crossed and say your prayers that the third time will be a charm when we attempt to get off the C-PAP in the next few days...

Here's a good close-up from tonight. See why I call her 'Chubs'?

Saturday, August 22, 2009

7 pounds, but back on C-PAP.

Well we've got good news, and bad news. The good news is Riley has made it over 7 pounds! As of last night, was 3217g, about 7lb 1.5oz. But the bad news, she went back on the C-PAP Wednesday night, right about the time I was posting that last entry on the blog. She made it a little over 12 hours before starting to struggle breathing, and had a few more bad de-sats. And then yesterday it was turned back up to 5. So, now we are back to where we were last week, trying to get her lungs strengthened to be able to start breathing on her own. It can be a bit frustrating, now that she's been in there 83 days, and we've seen quite a few babies come and go. But we know this will all be over soon, and we'll have her home - just wish it would come a little quicker! She's a week away from her due date, and there's really no chance she'll be home by then. At this point, we're shooting to have her home by Labor Day, but not sure if that will happen either. Her O2 needs are doing very well, hovering around 21-25 most of the time (21 is the lowest it will go - that is equivalent to "room air"). So with that being so good, just need to get her lungs strong enough to not need the pressure of the C-PAP. Hopefully they'll be able to try it again by the end of the week - and we'll pray that 3rd time is a charm.

I missed out on seeing Riley on Thursday, due to some work obligations out of town. I've now missed two of Riley's 83 days. I guess that's not bad, but still hard to be away from her. I got a nice treat when I saw her again last night though. When we arrived and I held her, she was VERY awake and alert. I've never seen her eyes so open and looking around. Here's a picture of her, looking so big!

She's also not helping things when she gets her hands out and starts pulling on her tubes. She has pulled her NG (feeding) tube out multiple times, and seems to get her C-PAP out of her nose at least once a day. So last night after it happening twice in an hour, they found a way to keep her from getting a grip on them...check out the socks on her hands. Funny!

Wednesday, August 19, 2009

No more C-PAP...for now

Today brought more wonderful news. When Pam went in to see Riley at lunch today, she was surprised to find out Riley had been off the C-PAP since 9am and was doing really well. She opted not to hold her, as Riley was sleeping really well and she didn't want to disturb her. She's breathing very fast and heavy, since she's doing it all on her own now, and it uses a lot of energy - so she needs all the rest she can get. Still on oxygen through cannulas in her nose, but its not providing any pressure. They attempted to go ahead and drop her feedings down to the 30 minutes, but after a few bad de-sats they decided to move it back to 2 hours. Probably too much too fast, so we'll take it one step at a time. She needs to calm her breathing down a bit before we try that again. If she continues to have to breathe that hard, there's a good chance she'll get too tired from it and need to go back on the C-PAP. So for now, we'll just keep hoping she sleeps well, stores some energy, and grows just enough to move on. Once they can get those feedings moved down, then she should be ready to move upstairs to the Special Care Nursery. Can't wait!
Her weight was up to 6lb 13oz last night. She has been gaining lots over the past week, and really getting chubbier by the day. Combined with her red hair, she's getting cuter every time we see her.

My math was wrong the other day, and it turns out today is actually day 100 of Wesley. Riley is 78 days old! I've said it before...but can't believe how fast time flies!

Our daycare search was somewhat futile, but did yield some positive results. We were able to find one place that we really like (New Song), and a few that we didn't (Princeton, The Castle). However, none of them can take her while she is on oxygen and/or the apnea monitor. Unfortunately, thanks to Rainbows United's bankruptcy, they no longer have infant daycare, and have also eliminated all non-special needs toddler daycare. Hopefully she won't be on the oxygen when she comes home, or at least no longer than a few weeks. Not sure how long she would be on the apnea monitor, but again we are hoping it won't be long. Luckily, Pam's work is flexible with her schedule and our plan is for her to be off 6 weeks after Riley comes home, and then probably go back a few days a week. My mom has offered to help watch Riley if we can't send her to the day care at that point.

Here's a good pic of Riley with Mommy from Monday:

And a close-up of Riley, you can see so much more of her face now!

Sunday, August 16, 2009

Lovin' the bouncy seat

Friday night we were welcomed with another new surprise - Riley was laying in a bouncy seat! They said she was big enough now, and at the age where they like a lot of attention, so the bouncy seat should help keep her happy. They also told us we were welcome to start bringing in some toys like that if we wanted. So on Saturday, we brought in our own bouncy seat, with a vibrator on it - and she seems to like it even more.

She's getting closer to coming home, but still probably a few weeks away. They got her CPAP back down to 4, and O2 needs are hovering around 30%. Sometime this week they'll probably try to take out the CPAP again. Hopefully she'll do better than last time. Once she can stay off the CPAP, she'll move out of the NICU and upstairs to the Special Care Nursery. That will be her home until she can take to the feedings and everything well - then its home free!

Her weight is up to 6lb 6oz! Still averaging an ounce or two a day - which means at this pace, she's going to be 7-8lb when she comes home. Wow! If you would have told me that 2 months ago, I would have called you crazy.

Tomorrow will make 100 days since May 11th (if I did my math right), when Pam first went into the hospital. Where did our summer go? Time sure has flown by.

Here's Riley lovin' the bouncy seat. She was trying to hold the pacifier in herself...managed to keep it in there for a few seconds without losing it.

And in her own from home now...the vibrations really seemed to help keep her calm.

In other news, I finally took the plunge and joined Facebook this weekend. Yes, I know I always swore I never would - but with as much as I'm online at home now, I figured why not? Now I know why I avoided it for so long - it has taken over my life! If you're on there, find me and check out the photo albums - Riley has her own full of photos, many more than just what I've posted on here.

Thursday, August 13, 2009

6 pounds

Riley officially hit the 6 pound mark the other night, and weighed in last night at 6lb 3oz! We have all these "preemie" clothes waiting for her at home, and she won't even fit into them now. No real changes other than that. They are continuing to up her feedings and phenobarb to go along with the weight gain. Her O2 needs haven't changed much this week, still hovering around 28-33%, and C-PAP level at 5. Need to get it back down to 4, so she can wean off of it and get back to where she was headed towards last week. She's still having little "episodes" just about every day, but hoping that goes away soon too.

Here's another photo from tonight. Red hair and chubby cheeks...that's our baby!

Monday, August 10, 2009

Off C-PAP, then right back on

Saturday morning Pam and I got the pleasure of being there while Riley received the last round of her 2-month vaccinations. She actually handled it pretty well and only "screamed" (all face, no noise) when the needle was stuck in and calmed down pretty quickly. After that, we left for Kansas City to go see the Royals play. Early Sunday morning, they decided to go ahead and take her off the C-PAP. But after only a few hours she already was having multiple episodes of apnea/bradycardia. They put her back on, and after she still had another episode they had to turn the pressure back up to 5. So...after all was said and done she's behind where she was last week. There's a good chance it could have just been a little too soon after the vaccinations, or could be her phenobarbital levels needed adjusting (since they had to up her dosage again today). We're hoping she is able to try again in the next few days so we can move on to the next step. Once she's off the pressure and on just straight oxygen, they will move her feedings from being spread over 2 hours down to 30 minutes. If she can handle the food filling her stomach quicker without spitting up, they'll move to trying breast feeding.

Overall she's still making progress, but like I've said before she takes a few steps forward then a step back. One thing we've learned throughout this whole ordeal is that Riley wants to set her own pace, and not follow what anyone else says she is supposed to do. As of an hour ago, she weight 2713 grams, which is just barely under 6lbs!!! By the time she comes home, she's going to be right at her expected weight - both Pam and I were around 6.5lb.

We've been holding her quite a bit the past week - just about every day. Here's a good one of Mom and baby.

She has taken well to the pacifier. Can't keep it in her mouth that well, so we have to hold it, but she does suck on it quite a bit - a good sign that she'll take to the bottle or breast when we get to try it.
And here's a great closeup from tonight. When they put her back on the C-PAP, they didn't put the pressure relief tube back in her mouth (blue tube from the previous photos). I'm sure she's glad to finally be able to close her mouth fully for the first time since she's always had something down her throat until now. Still has the feeding tube down her throat, but it comes in her nose, not her mouth. Also note the pads under the tape on her tubes to keep the tubes off her cheeks. The tubes had been rubbing her skin and caused some abrasions on her cheeks. She's had bad reactions to the tape before too, so not sure if she has some allergies to them or not.

Thursday, August 6, 2009

Getting closer to home

Riley just keeps getting better every day. Her C-PAP pressure was turned down to "4" today, and O2 needs have been hovering at/under 30. We had a long talk with Dr. Hsiao, our neonatologist, today discussing this among other things. He said that if she continues on her current path, she should be taken off the C-PAP in the next couple days! At that point she'll still have oxygen needs, so will have nasal cannulas (like the kind you see on elderly people with emphysema) delivering oxygen to her lungs, but without the back-pressure of the C-PAP. She would also be able to attempt breast and bottle feeding. If she can latch on quickly, and does good on the cannulas, then she would be ready to come home. Of course, this also depends on her not having any more spells of apnea/bradycardia (A/B). She has been having about one A/B every few days, but the latest ones have been mostly related to her phenobarbital levels being too low. That will all need to get worked out before she can go home as well. Based on all this information, we are guessing we have a few weeks left before we get to bring our little girl home.

She had her eye exam done again. They do this every few weeks to make sure the constant flow of oxygen doesn't lead to problems in her retinas. Once again, she passed with flying colors! She'll probably have one more before she comes home, as well as a hearing test. In the next few days, she'll be getting her 2-month vaccines - 5 shots all together. It is kind of a relief that we won't have to deal with a cranky baby at home for this round. We all know how much they love those shots!

In other news, we are going around tomorrow to visit day-care centers. Since she'll be coming home soon, and Pam will have to return to work after 4-6 weeks, then we don't have much time to figure this out! If you have any suggestions, please leave a comment and let us know. We'd like something on the northeast side of town. Riley will likely be coming home on an apnea monitor, have regular medications to administer in her food, and it is also possible she'll still be on the oxygen. Because of this, we are looking more towards centers rather than in-home.

Here's a few photos from yesterday and today...

Riley likes to say her prayers when going to sleep.

She was very alert and awake for this picture. If we are there after her changing and the start of her feeding, she usually has her eyes open and will look at us for a few minutes, before falling back asleep. Look at that red hair! Where does that come from?

Today's holding was very rewarding. I got there right after they did the CPT treatment (vibrator on the chest), and suctioning. She was NOT a happy camper and was "screaming" and crying pretty bad - and when I say screaming, you could barely hear it but could tell she wasn't liking it. But as soon as I picked her up and held her in my arms, she calmed right down. Made me feel like I was doing something right.

And here she is with her K-State purple blindfold on. Because of today's eye exam, her pupils were dilated and had to be protected from the light. The nurses knew exactly which color to put on her! Can't wait to have her wearing the rest of her Wildcat clothes waiting for her at home.

Tuesday, August 4, 2009

Continuing to grow

Not a whole lot to tell since Friday. Riley is continuing to get better on her oxygen, with her level hovering around 33%. That is the % of oxygen in the air they are giving her - with the goal being 21% (which is what normal room air is). For the majority of the time on the ventilator, she was around 40% - so she is doing great. Her weight got all the way up to 5lb 6oz the other day, but she's lost a bit and is back down to 5lb 3oz. A little weight loss is fine, since she is still way above where she needs to be. At this rate, she should be able to wean off the C-PAP in the next few weeks. Pending any setbacks, we should still have her home before her due date (Aug 29th).

Here's a great picture from last night. Can't believe how big she is getting!

Also....I went back to the early posts on this blog and fixed the pictures. I found out that not only was I putting smaller pics on, but you weren't able to click on them to view bigger versions. I figured out how to do it right after a few posts, but didn't ever go back until now so you could do it on the early photos. So check out the posts from the first week and see how far Riley has come!