Sunday, November 30, 2008

Sleepy Sunday

I don't really understand how this is comfortable.Don't his hands fall asleep?
He caught a lot of zzzzz's today...
And then he was fussy.
He's thinking "man my Momma's crazy!".

This is my favorite. He looks so content.
Rhys had a great weekend. His oxygen was lower this weekend than Thursday and Friday. He was on 2 liters of flow (~84% O2) for nearly two days, but the doctor ordered lasix to get rid of some of the fluid and now his flow is at about 3/8 liter (~33%) to 3/4 liter (~45%). He has slept well the last two days. He loves his tummy, as you can see, but only after he gets settled down. He is gaining great strength in his neck, and can keep it up for longer lengths of time.

He is still taking two bottles a day. One in the morning from the physical therapist and the second in the afternoon from us (or the nurse). We are still working on keeping his mouth closed while he sucks and that is more difficult than you would think. You have to make sure the bottle is properly aligned, that he is keeping his mouth sealed, he is breathing and swallowing adequately in between two or three sucks, and then that he is maintaining his oxygen saturation. Plus, Rhys gets super tired about half way through his feed and doesn't want to work for the rest of it. But, he's doing great with it and is taking all but a few cc's per feed.

Thursday, November 27, 2008

Happy Thanksgiving

Ohh, the Aggies are playing today!
They're my favorite team!
Happy Thanksgiving everybody
I hope the Aggies win!
All this turkey makes me sleepy!

Happy Thanksgiving from Rhys. We have a whole lot to be thankful for! We are thankful for our sweet baby boy. We are thankful for all he has overcome, and we are thankful for his personal angel and twin brother Bentley looking down and protecting him.

He got mad this morning when he couldn't find his pacifier and he rolled over from his stomach onto his back. We weren't there but his nurse told us what happened. She was very excited. She also told us it was a very good sign that he can "lace" his fingers together. Rhys is getting two bottles a day now and he's doing quite well. He hasn't taken a whole bottle again, but he is doing at least half of it per feeding which is great. We need to work up to a bottle at every feeding before Rhys can come home. He had a consult today for his hernias. We are waiting to hear back on what the doctors recommend. While I don't want him to have to go back on the vent (even for the surgery), I would be worried about it if he went home with them as is. But, we will obviously do whatever is best for Rhys.

We just fed Rhys his first bottle and he took a little over half. He is still building up his endurance and learning to keep his mouth sealed, but he's doing it! He has a look on his face after eating that can only be described as "milk drunk".

And while the Aggies might stink this year, we are still flying the colors loud and proud! Rhys says "gig 'em!"

Tuesday, November 25, 2008

Rhys loved his bottle

I'm really diggin' the new swing
This was my first bottle feeding...
...and I did pretty darn good.Man that was hard work...
...I think I'll take a nap!

Rhys had his first bottle experience today and he was quite impressive. He sucked down the whole bottle (a full feeding) in about 15 minutes. The only problem they saw this time was that he needed a little help with keeping his mouth sealed. He did a great job, much better than they thought he would. He will be getting bottles twice a day now. He had such a funny look on his face when he was finished. He ate a full feeding in about half the time he normally gets it (they feed him over 30 minutes when they use his feeding tube) and he looked so exhausted. Very cute.

The doctor switched Rhys' O2 today as well. His nasal cannula was being blended - 2 liters of flow on variable oxygen. He is now on 100% oxygen, at 1 liter of flow. Rhys will most likely be going home on oxygen so this is the way they do it at home - they don't blend it. So, now they will be adjusting his flow instead of his oxygen. But, this does not mean he is actually receiving 100% oxygen. My understanding is that full 100% oxygen is when you're on 2.5 liters of flow, so 100% O2 at 1 liter flow is a little less than 50% oxygen if my math is correct. Anyway, that's how they're doing it now. Rhys also got a swing yesterday and he seems to enjoy that as well. He has turned into a baby that likes to be patted - on his back, on his bottom, he loves it so the swing is right up is alley.

Rhys will be getting an MRI soon to check out his head. This is standard procedure for preemies such as him and is done prior to going home. I'm a little nervous about what (if anything) the MRI will find, but better to know it now and know what we're up against. Other than that he is doing so great and we're hoping he keeps it up!

Sunday, November 23, 2008

Still on cannula

Checking out my mobile

Sitting up and looking around

In the middle of a fit (I have a mental picture of this
happening not so far in the future, except he'll be throwing
himself down on the floor of the local toy store)
Resting with my Mommy
After my umpteenth fit of the day this was the only thing that workedRhys' new quilt from his great aunt... quite impressive
considering she'd never seen his nursery before
Rhys is still on the nasal cannula. They've even removed the vent from the bedside. His weekend primary nurse was there this weekend (hooray!), but I'm not sure we will be so lucky in the future. Rhys had an okay weekend. Yesterday he was having tummy troubles and I think he was feeling yucky from his vaccines because he was all kinds of fussy. Nothing we did would make the boy happy. His oxygen requirement was pretty high all day yesterday, but he calmed down after his bath, only to need more O2 early this morning. He was good until we got there and then he needed oxygen in the 70s and 80s most of today. I've noticed he has dropped his sats a couple of times without coming back up on his own. This isn't good, but I don't think it's unexpected. It is just a little disappointing since he wasn't really doing that on CPAP. They are pushing his pretty hard though, and he's come a long way.

The nurses he's had so far in the new pod all have made a huge deal about him dropping his oxygen saturation... it's been taken to a ridiculous level several times. This wouldn't be so concerning to me if he was going to remain on his current doctor team, but I think he's going to be moved at the end of the month. The problem to me is that a new nurse team AND a new doctor team could spell disaster for Rhys and staying on cannula. If these nurses keep having their mini-heart attacks when he desats they might "alert" the doctor team (comprised of newbies who don't know him from his neighbor) and give some sort of false urgency which could mean they put Rhys back on CPAP, or even worse the vent. Will this happen? No one knows, but it is a huge concern of mine. I voiced my thoughts to the charge nurse this weekend (who we've gotten to know and are friendly with). Hopefully we can work on it.

We're still hoping for Rhys to get a bottle tomorrow. We are going to call first thing in the morning to let the nurse know that if it happens we will be there to do it so don't start without us! Hopefully Rhys will be feeling (and acting) better and his doctor will give the okay.

Rhys' thyroid has been retested several times since the initial consult and everything is looking good. His levels are now within normal range, so I'm not sure if they will continue to monitor it or take this as a sign he is okay. Also, his eyes are still looking great, which is a miracle considering he has had several things that would drastically increase his chances for severe ROP. His follow-ups are now every two weeks and his veins are almost to zone 3 which is fantastic. The only other thing I can think of that he has to deal with are his hernias. He has a horrible groin hernia that hurts ME when I look it. I know any male (including Cody) is horrified when they see it. He also has a slight umbilical hernia. These both will have to be corrected, but the question is when. Not looking forward to that surgery... minor, but it still requires Rhys to be knocked out, which means he'd have to go back on the vent for the surgery.

Friday, November 21, 2008

Holy Canoli! Cannula!

Oh man, not again, won't y'all just leave me alone!?

Wait a second, this is awesome!Much more comfortable
That's right ladies and gentlemen, the vent is OFF!
Time for a belt upgrade!So peaceful

Today the CPAP came off. Woohoo!! Rhys had a trial run for a couple of hours this morning starting at 11a.m. and he did great. The doctor was expecting O2 in the 80s (as was the case when he came off the vent and onto CPAP), but Rhys was anywhere from 40% to 60% the whole time we were there. His nurse was very attentive, trying to help him out to make sure he didn't fail his trial. So far so good. The doctor says if little man continues to do well with the cannula we can try to start bottle feeding on Monday. Hooray, he's doing it!!

Oh, and he received his 4 month immunizations yesterday and took it like a champ.

Thursday, November 20, 2008

18 weeks

Rhys was 18 weeks yesterday. Wow. His PEEP is at 4 and his oxygen requirement is better since the nurses aren't cranking it up at every turn. The nurse he had yesterday has had him three times now and I think she's finally getting it. Here are the problems as I see them, of course I am a biased parent:
(1) There is no transition from level 3 to level 2. We're technically still in level 3, but being staffed with level 2 nurses so it's almost even worse. They take you and your child away from everything you know and drop you into a situation where the nurses don't know the child and you've never seen the nurses. While this isn't a huge deal if you're in level 3 for a short amount of time, that is not the case with us. We were there for FOUR months! You lose your primaries and are forced to watch the learning curve with your child as the guinea pig. From what I've witnessed the nurses in level 2 might as well be on a different floor instead of across the hall given the amount of "cross over" I have seen. There is basically none - no communication, nothing to shed to light on a child's history. Is that the nurses fault, not really, but you'd think it would benefit all parties involved if they tried to give some sort of report. I don't know for certain if this is actually how it works, but it's what it seems like based on observations and conversations I've had with the nurses in the new pod.
(2) The situations you see in level 3 are far more serious and severe. Therefore the very minor issues from level 3 seem super serious in level 2 because they don't typically deal with very sick babies, or if they do it isn't as common. Yes, it is concerning that Rhys desats sometimes, but in the overall scheme of things I don't feel like it's that huge of an issue given all he's been through and overcome. As long as it is short in duration and he comes back up leave him be! If he needs a little more oxygen, fine, just don't panic and crank him up to 100% because he drops to 60 for a few seconds.

As far as talking to the nursing managers I am not there yet, though I've certainly voiced my thoughts to the doctors, his primaries, and the nurses who take care of him. I am over my initial mood and pretty much resigned to the situation. It isn't the nurses I am mad at (except the one who gave him ativan), it is the situation. I would have just liked some sort of transition and I know we aren't the only parents who feel this way. The doctor was supposed to discontinue the ativan order, but I think he hasn't yet. I am going to try to speak to him about it today. The ativan was a carry-over from a while back when Rhys did need ativan. He might still need it occasionally now, but I don't want it to be at the nurse discretion - a nurse who has never had him before. I would rather they have to consult a doctor before they sedate him for crying too much... and only 3 hours into their shift. So, it's going to take a little time and a lot of adjustment, but I think it will be okay. And if it's not then we will speak up again, because we are Rhys' only voice right now and I've never been afraid to speak my mind.

I have also recently thought more about the fact that Rhys is in his bed all day long. He occasionally gets the bouncy chair or is held, but other than that the majority of his time is spent lying down. Yes, that is true of term babies as well, but they get more interaction. So, I am making it my mission to talk to him, touch him, and interact with him even more than we have been. It's the small things parents take for granted that we don't have. I can't pick Rhys up and walk around with him. I can't stand and hold him on my shoulder. He has to basically sit still so he doesn't lose his tubes so that drastically limits the amount of things you can do for/with him. So, my new goal is to mix it up for Rhys (and for us) so he gets a little variety. I'm dreaming of the day he can take a ride around the block in his new stroller (that took mommy an hour to figure out how to put together because she didn't wait for daddy to get home to help her).

Tuesday, November 18, 2008

We're very unhappy

We found out today that even though Rhys’ new pod is still considered level 3, it is staffed with level 2 nurses. This means he will no longer have his primary nurses unless we find level 2 nurses that we like. We are beyond unhappy about this. And to be honest, I haven’t been much impressed with the new pod so far. Cody and I have camped out at the hospital (literally) every day since his birth, but the new pod has a completely different feeling and I don’t like it. To those who’ve never done this it may not sound like that big of a deal. But, it is a HUGE deal. If you have children think about this: how would you feel if you were unhappy with who was taking care of your child but you had absolutely no power to do anything about it? That is where we are. The only small consolation is that his primary doctor is back on shift and Rhys will remain on his team for the rest of the month. After that I am thinking he will be booted to a different doctor team. This is fantastic for Rhys in that he doesn’t need to be on the sick baby team or in the critical pod, but at the same time he is being handed over to a different group of people who don’t know a thing about him. I don’t know that I have the patience for another learning curve.

I also found out yesterday that the night nurse gave Rhys ativan because he was basically crying too much. This made me completely furious. I told the day nurse my feelings about it (of course it wasn’t her fault, she didn’t do it) so if I find out today that he got it again I am not sure what I will do. Nursing managers beware!! If he really needs it, fine, help him relax. But, don’t you dare drug my child because you think you’re too busy to figure out what is wrong with him. If he is thrashing his head and moving around maybe he needs something other than you medicating him. I have noticed in the new pod that they don’t really try to figure out WHY Rhys is crying, they just crank up his oxygen if he starts to desat. I am not okay with that. Think along the lines of if your child’s daycare was able to sedate them because they were just taking up too much of their time. Sounds ridiculous I know, but that is what I'm feeling like. Or, how would you feel if your child’s teacher recommended that you medicate them for say ADD? At least in that case you’d make the decision. Imagine our frustration, we aren’t consulted before they do it.

Anyway, I spoke to the doctor yesterday and he is very excited about Rhys’ progress. His plan is to take him to CPAP of 4 (when I do not know) and then to nasal cannula. I feel like he will take a day or two to watch him since he just got on shift, but I could be wrong. He has instructed the nurses to be more aggressive in weaning Rhys' oxygen, so he isn't sitting at 77% O2 and satting 95 like he was yesterday. Overall he said he looks great and this doctor definitely wouldn’t say it if he didn’t mean it! Way to go little man!

Sunday, November 16, 2008

4 months

I'm still loving my tummy time.
It's mine, mine, mine!
Rhys is good at sprawling out.
Beautiful blue eyes.

More "loving time" as one of his doctors calls it.

Today marks 4 months for Rhys. He's getting so big! We have been in the new pod for a few days now and I have to say I'm not really liking it. There are fewer nurses per baby as compared to the other pod and they aren't quite as attentive. Rhys' oxygen has been higher since his move than it had been previously and that is mainly due to the fact that the nurses don't know him and insist on cranking up his oxygen when he starts to desat. Very aggravating. I feel like I've been griping about it nonstop since we got here. I guess it will just take time for them to get to know him. I have however let two of the doctors know, and will also let Rhys' primary doctor know tomorrow when he comes back on shift. I just don't want them to think this is all Rhys acting up, and delay nasal cannula. Speaking of cannula, his pressure is still 5 (not sure what happened to 4 on Friday, I asked to make sure he was okay and was told he was doing great). Feeds are at 50cc and he's weighing 6 pounds 11 ounces.

Friday, November 14, 2008

New pics of both boys

Baby Rhys
Baby Bentley
A nurse took these pictures with Cody's camera phone right after the boys were born. I just saw them for the first time a few weeks ago, and Cody finally figured out how to get them off his phone and onto the computer. *sigh* Such beautiful baby boys.

Thursday, November 13, 2008

17 weeks

We're on the move!Just like superman flying through the halls!

Rhys was 17 weeks yesterday. He is no longer in super sick baby pod. Fantastic, yet sad. We made the move this afternoon right before evening shift change. Even though his primary nurses and doctor team will follow him to his new pod, we got used to the familiar faces we saw there every day. But, he is again in the company of previous pod mates who moved out before him. I'm acting like it's across the street instead of across the hall.

His oxygen requirement continues to decrease by the day. He was at 35% when I came in today, but had to be bumped up to the 40s after he had his face retaped. He was on nasal cannula for the trip across the hallway and did great, but then had to be put back on CPAP since that was just temporary for the move. The doctor's plan is to take him to CPAP pressure of 4 tomorrow and then to nasal cannula on Monday as long as he continues to do well. Once he's settled on CPAP he can start learning to bottle feed. Meanwhile, Cody and I are working on getting everything together for when he does get to come home. We were in the process of finishing the nursery when the boys were born, so we're still trying to tie up the loose ends... but we're almost there. His stroller came in today and I think it requires a PhD to understand the instructions. I thought the idea behind a reference manual was to explain the how all the pieces fit together??

Tuesday, November 11, 2008

We're on the move

We were told today that we are getting the boot! This whole time Rhys has been confined to his 20 square feet in the same pod. But, no more! His current pod is designated for the really sick babies and apparently Rhys isn't that any more. He will still be in NICU level 3 and on the same team of doctors (for now), but we'll be moving across the hall to another pod for babies that are more stable. We have a well worn path from the lobby to his bedside, so this is going to be different for sure.

Cody and I interviewed a pediatrician today. She frequently deals with high risk babies and has a few patients who are graduates of the NICU. We really liked her and she is conveniently located across from the hospital. This is part of our trying to get a grasp on what to expect and what we need to do before Rhys comes home.

Rhys' CPAP is still at a pressure of 5 and his oxygen was 52% the whole time we were there today. I am still not sure if they are going to lower his pressure a bit or move onto nasal cannula, and I do not know when they will make another change. Even though he hasn't seemed to notice his pressure decrease from 8 to 6 to 5 they are giving him a little time to adjust in between.

Monday, November 10, 2008

CPAP of 5

So exciting, CPAP of 5 today and oxygen in the 40s! Amazing! He even got down to 37% for a bit while I was holding him. Rhys had a fantastic day according to the nurse. They lowered his pressure and again he didn't notice. 40-50% oxygen is low for him at any time, but on CPAP it's phenomenal (considering he was requiring 80%+ when he first started). We're hoping he continues to behave so we can try the nasal cannula this week. I still don't think the doctors believe Rhys is doing this well given his degree of chronic lung disease. Yes, his oxygen requirement is high, but the boy isn't on the vent! I think with most other babies they'd go from pressure of 5 straight to the nasal cannula, but we'll see what they try with Rhys. I am anxious for him to go cordless (as one of the nurses says), but at the same time don't want him to be pushed too much too fast.

He is getting to be such a funny boy. I love his stretches and noises and faces. I could honestly sit and stare at him for hours, oh wait, we actually do that! He is really getting good with his head movements. He can mostly control it now instead of it wobbling around when he lifts it. He was turning his head back and forth today trying to get comfortable while lying on his tummy. It is amazing see a 6 pounder (6 lb 6.5 oz to be exact) do this, since most babies are quite a bit bigger when they start lifting their head.

Sunday, November 9, 2008


Saturday was the boys' official due date. Lil' man is 6 lbs 4 0z. He is on a CPAP pressure of 6 (down from 8) and his oxygen requirements are in the low 50s. This is wonderful for Rhys. There are rumors in the air of trying to put him on the nasal cannula this week if he continues to behave. That would be tremendous! We came in yesterday for a couple of hours early in the morning because we were fortunate (or maybe not :)) to get tickets to the Texas A&M - Oklahoma football game. We had a great time even though the Aggies got slaughtered. It was good for Candice and I to get out and do something "normal". The picture above is Rhys enjoying his bouncy chair. You have a really great shot of his double chin.

Thursday, November 6, 2008

16 weeks

Maybe this doesn't look comfortable, but let sleeping Rhys lie...

Oh yeah, I got my daddy trained!

It's hard work being so cute!

I'm not always such an angel.
Oh my, what is this goodness??

Rhys was 16 weeks yesterday. He has been awake since I got here today and has been quite a good boy. They lowered his PEEP to 6 today! Way to go Rhys! The doctors were waiting on him to have a lower oxygen requirement, but one of the nurses pointed out that this IS his oxygen requirement and has been since his birth. So, they tried it this morning and so far so good. I don't think he even noticed. His oxygen has been at 58% since I got here today. Woohoo! We're hoping this continues.

Daddy got to give him a bath tonight and (speaking of candy) Rhys enjoyed his first dum-dum sucker. Boy did he like it! His feeds are at 45cc (1.5 ounces) and his dye test on his ureter came back clean. I will have Cody post new pictures later.

Tuesday, November 4, 2008

Still slow and steady

The last day or two Rhys has had a foam headband to keep the CPAP on and we've gotten to see his hair. Since he's had a hat on for the last three weeks I sort of forgot what it looks like. It seems as though he has the same amount of hair he had at 3 pounds, but his head is much bigger now so it looks a little sparse. It is still a reddish brown color and looks as though it will have a wave at the very least.

He had a dye test to check his ureter today. He did very well considering it required a catheter. Hopefully we will get results tomorrow. He slept comfortably the entire time we were there this afternoon, with oxygen at 60%. His latest eye exam revealed no major progression of his ROP - so far so good (thank you Lord!). His feeds are at 43cc and they are reducing his fortifier from 27 to 24 calories per ounce. Rhys still attacks his pacifier and loves it, and he is starting to pay quite a bit of attention to his mobile. He will track the mobile with his eyes for a good bit of time. The nurse says this is excellent.

The endocrinologist team stopped by last week to discuss Rhys' thyroid issue. His levels were just barely above the threshold that determines who needs treatment so they are going to do another test in about a week to see if anything has changed. Depending on what they find they might decide to start Rhys on meds. They just want to make sure he actually needs the meds, because once started he is pretty much committed to them until he is about 3 years old. The reason for this is that the major brain development occurs during this time and the thyroid hormone is crucial for proper development. If a child has insufficient hormone it can cause them to lose 1 to 2 IQ points per month, so once they are on the meds they don't want to take a chance the child is still not producing adequate hormone on their own. The doctor assured me that Rhys hasn't lost any IQ points due to his thyroid and he will keep a close eye on it.

Rhys tipped the scales at 6 pounds today! I say this all the time, but he is getting to be quite the chub. At 6 pounds and roughly 18 inches long he is on what I would consider the lower end of the "newborn" range. Given that the twins' due day was this Saturday (Nov 8) and considering all Rhys had to go through while developing outside the womb, I don't think he is doing half bad.