Kangaroo Care (3 days in a row!)

Today Rhys got to Kangaroo care with mommy. I don't think little man enjoyed his Kangaroo caring today. He was acting up while spending time with Candice. He seemed to do really well in his isolette though. His vent settings were reduced today which is a step in the right direction. His x-rays showed his lungs are clearer than they have been lately, but they also showed that his little intestines are backed up! We need Rhys to POOP! He is getting full feeds (17 cc's = 3.5 tsp = 0.6 oz) every 3 hours. Late tonight they should start fortifying the milk with more vitamins and minerals. Normal milk has about 20 calories per oz. Fortified milk has 24 calories per oz. So little man should start packing on the oz's soon! The doctor came by today and said she was pleased with his progress - we'll take that!

More Kangaroo today

Rhys got to kangaroo with daddy today for two and a half hours! What a lucky little man. He is still on the traditional vent, with settings much the same as yesterday. His O2 is in the 50s and he has been snoozing since we got here. The weekend doctor is happy with his progress. She sees him occasionally when she is on call, but not consistently. She said he has come along way. His little tummy is super full from all the milk (he is up to 17cc per feed today with no TPN or IL) and the nurse thinks it's getting a little backed up.

Another 23 weeker came into the pod today and to the team's amazement he is breathing on his own with 21% oxygen. It is strange hearing his cries since all the other babies in the pod are on vents and you can not hear them. I was curious about the process of admitting babies into the pod since we obviously were not present when our boys were brought up. It's unbelievable to me still that these babies (including Rhys) have a chance because of the medical technology available today. Please pray for baby Adam and his family.

The OK Corral brings you into the future with... video

We here at the OK corral strive for excellence in customer satisfaction. That's why we decided to bring you a glimpse into the future of blogging with... video. That's right, its not just for Regis anymore! Check out Rhys wondering "What happened to Mommy?!?!" after getting some much needed Kangaroo care.

Kangaroo Care

Kangaroo, woohoo!

Sorry dad, he still has the curl cow lick. Click on the

picture to enlarge if you need a better look.

In case you don't know, you're interested in the blue "100".

That means he was loving it!

Yea! We got to kangaroo again today for three and a half hours! This is only the second time we've been able to, so I texted Cody at lunch and he came up to enjoy it with me. It definitely did my heart good. Hopefully little man will stay good through tomorrow so Cody can finally hold him. Rhys' O2 started out at 75% and they were able to wean him down to 60% by the time I finished holding him. But then they had to re-tape his mouth so they messed him up a little then. That was the first time I'd seen him without tape covering half his face. He is even more of a cutie pie.

So, we're still on the conventional vent today and we're at 45bpm. They tweaked that up from 40 to 45 bpm yesterday before we left, so no change there. His oxygen yesterday was in the 50's, and he was requiring a little more this morning so they took up the pressure just a bit. His last blood gas was good, but no word yet on whether the doctor will make any vent changes. His feeds are at 13cc, which is close to full feeds I believe, so they are going to take him off his TPN (the supplemental nutrition he's been on) tonight. The echo this morning revealed a "tiny" PDA that was "unchanged" from Monday's echo. Thank the Good Lord, one less thing to worry about at this moment. I almost cried when the doctor showed me the report. We are still dealing with the potential of the PDA reopening and a probable immature adrenal gland.

Please pray for the PDA to remain small and eventually close on its own, what a relief that would be. And, please continue to pray for Rhys to stay strong, tolerate his feeds, gain weight, stay free from infection, grow healthy lung tissue and for his adrenal gland to work properly. Wow, that was a lot. To borrow a term, each and every one of Rhys' prayer warriors is greatly appreciated. I know he feels how much he is loved.

Oh, and happy belated birthday to Olivia. She is a former 23 weeker who just turned 1!

Back to the traditional vent

So we're back on the traditional vent this morning. I am excited on one hand, but don't want a repeat of last week when they tried it and everything collapsed. I am told this is "nudging the chick out of the nest". As long as it doesn't end up being a gigantic shove again I think I am fine with it.

Rhys' O2 is about 50% and he is on 40 breaths per minute (bpm). They are going to get a follow up blood gas in about an hour so we'll see what it says. The last time they switched him he seemed to not really breathe over the machine very much, which was strange because he was fighting the oscillator by breathing over it. I guess he was just exhausted and wanted to rest. Today he seems to be breathing over the vent quite a bit, which isn't a bad thing on this machine since it works like a regular breath. They bumped him to 9cc per feed, so we're back to where we were when we stopped the feeds a while back. They are planning another echo tomorrow to check out the PDA because his lungs seem to be full of fluid again and they had to give him more lasix. They really don't want to have to do the PDA and honestly I would rather them not have to either. If by some miracle he can handle this regular vent and maintain his progress they might not have to address his PDA.

Also, sad news for a family in the pod. Their baby boy was removed from support today and, having been there, my heart aches for them. Please pray for baby Geovanni's family.

Today little man is 6 weeks old

Well, we left Rhys yesterday afternoon with a MAP of 13 and oxygen in the 60s. A follow-up blood gas was due around 7pm, to see how he was handling all the tweaking. I was sure I'd walk in this morning to cranked up settings, but to my complete amazement they are the same! He was able to adequately maintain his levels with the lower oscillator settings through the night and the doctors bumped down his MAP again to 12 right after I got here. They are going to see how he handles this today and if all goes well they will try the conventional vent again tomorrow. Wow! I am hopeful this gradual lowering of settings will work for him, as compared to the drastic changes he previously hasn't done well with. The PDA is still on hold as long as we aren't going the other direction. He will still continue to get echos to make sure his heart is functioning properly, but they will not close the PDA unless it becomes their only option again.

His feeds are at 5cc now, so slow progress, but progress nonetheless. He did really well on the feeds before so I am hoping that continues and he can put on some significant weight. Speaking of weight, it is funny to hear all the nurses tell us how big he's gotten. Yes, relative to when he was born he is almost twice as big, and now looks like a tiny newborn. But at 2.5 pounds he is still smaller than most baby dolls. :o)

Day 41

So today we are much the same as yesterday. The pod was crazy busy today, we now have 7 babies in here and it is quite cramped. I think Rhys doesn't care for the noise so much. His vent settings are down (woohoo!) and his oxygen is in the high 50s. His O2 saturation is up and down, he falls and then comes up on his own. The doctor mentioned that they are pushing him a little, but I think they are pushing him a lot. His vent setting had a MAP of 15 yesterday and now they are at a MAP of 13. The MAP is the mean air pressure and is the pressure at which the oscillator keeps his lungs open. If/when he can be stable at a MAP of 12 they will try the traditional vent again, and they want this to happen by Friday. On one hand I appreciate them nudging Rhys in that direction, but on the other I don't want all his settings to be cranked up again when this doesn't work. I guess the other alternative would be to stay where he is and not make any progress.

Little man is getting a lot of tummy time and I am loving that as much as he is. He only has one nurse brave enough to put him on his tummy while he's on the paint shaker so she tries to give him as much tummy time as he can handle when she's on shift. The problem with the oscillator is that the tubing is rather short and very stuff so there isn't much flexibility to move things. She said today we need to try to figure out a way to Kangaroo on the oscillator. I don't think that will happen but it would be awesome if someone could figure it out. Rhys is getting 4cc of milk per feeding, compared to 3cc yesterday. Hopefully they will be able to keep increasing and get him quickly back to where he was before.

PDA update

Okay so no PDA surgery right now. The echo revealed a "trivial" PDA that was causing insignificant blood flow to the lungs. This should be great news, but we are somewhat confused. We were mentally prepared to deal with surgery tomorrow and now it's suddenly on hold. This doesn't mean the PDA will close on its own, it could in fact reopen all the way tomorrow I suppose, but as of now it's been decided to postpone the surgery and continue to monitor the PDA.

We were also told that Rhys is somewhat "steroid dependent", in that he responds well and very quickly when they give him steroids. Apparently there is a new school of thought among the medical community that perhaps preemies' adrenal glands can be immature and not produce enough steroids (the kind your body makes naturally). Rhys would fit into that category it seems, so the endocrinologist team has been called to take a look. I'm glad he is responding well to the steroids, but have heard of all their potential side effects (everything has a potential side effect). I am very nervous about all these meds, I don't want him to have zero quality of life later on because he needs all this extra support right now. I'm having a hard time with that lately.

Tonight they are going to try to wean down the oscillator and see how he does. Another trial and error (think the last traditional vent change).

PDA is the topic of the day

Rhys had another echo cardiogram this morning to check out his PDA. The last time they did it the reading was "large" PDA, and I'm hearing grumblings of what this echo revealed, but I'm waiting on the official word. My question is this, "large" relative to what? Is there a range of sizes that determine how you categorize it, or is it merely based on the cardiologists perspective? From what I understand it is the latter. I'm told that there are only a few cardiologists that read these things, so hopefully we'll get the same person and have some consistency.

Other than that everything is much the same as yesterday. No major changes to the vent settings and his oxygen is in the 40s.

Lazy Sunday

Sorry for not posting yesterday. I have had several people tell me they were worried after hearing he had a bad day and then there was no follow up. He started another course of steroids and he's been doing quite a bit better (relative to how he'd been previously). His vent settings are lower and his oxygen is in the 30's (wow!). They are still talking like they are moving forward with his PDA procedure this week so we're praying very hard on that one. Please continue to pray for Rhys' successful recovery from the procedure. They also started feeds again today, although only at 2cc per feeding. But, I guess that is better than no feeds. They want his tummy to get some action before the surgery. Little man has enjoyed some tummy time today, and he just loves it! Oh, and last bit of news... he's weighing in at 2lb 8oz and is a whopping 14 inches long!

They tried

Well, they tried, but the traditional vent didn't work so well. Rhys was having problems getting rid of enough CO2 so it's back to the oscillator. His settings are now REALLY high to try to help him get back to where he was before they switched to the regular vent. I was hoping for the best, but had a feeling this would be the outcome (same as last time they tried it a few weeks ago). The blood pressure is down a little once again and now he isn't peeing enough and his electrolytes are low. Sheesh. One good thing, at least he should be able to sustain the traditional vent long enough to have the surgery. But they need to get him back in order before they decide when that will happen.

We're trying the traditional vent again

Guess what I was greeted with this morning... they are trying the traditional vent again! The doctors made the rounds this morning and Rhys' head doctor got the look he gets when he's thinking of trying something new. They are continually having to increase sedation to keep him from fighting the oscillator so he said when they are "that feisty" it works against the oscillator so he wanted to see how he'd do on the traditional vent again. They are going to get a blood gas around 2pm to see how he is handling it. So far, he is at 70% O2 and his oxygen saturation has been where it needs to be. Please send up a quick prayer that we stay on the traditional vent. Not only is that progress, but it might mean Cody and I can hold our little man again!

Results of the photo shoot

Okay, so maybe I'm biased, but this is the best photographer ever! Wow, she does such fantastic work. Words can not describe how beautiful these pictures are. Grab a box of kleenex and take a look at our little man...

http://www.photojenicinc.com/Slideshows/aug2008_outlaw/

jen vajdos
photojenic, inc.
http://www.photojenicinc.com/

Rhys is celebrating 5 weeks today

Little man is 5 weeks old today. He's somewhat recovered from yesterday and seems to be resting more today. We heard grumblings yesterday of addressing his PDA, and today they tell me they've sent for a cardio consult. The doctor doesn't want to try the medication for fear of hurting Rhys' kidneys, so they're going straight to the surgery. Based on preliminary conversations the cardio team is in agreement that the PDA needs to be closed. However, they are unaware he is on the oscillator, so I am curious to see their reaction when they walk in to assess the patient. Rhys' PDA is apparently rather large and he isn't going to make significant progress with it open. I am extremely worried about the surgery. We are told it is a fairly simple surgery considering it deals with the heart, and doesn't take very long to complete. My big concern is that he doesn't have a lot of room to get worse before he gets better, which I heard is typically the case. His oscillator settings are already very high and if he needs extra support he doesn't have that much available to him. I have also heard the potential of starting him on a maintenance steroid course, much like the 10-day course he was on last week. I guess the hope is that this would help him improve enough to get him through the days following surgery. I will keep you all posted on the progress and outcome of the consult. In the meantime, please pray for guidance for the doctors to make the right decision and pray that Rhys will have a successful recovery from the surgery, whenever they choose to do it.

Thank you

...to everyone who said a prayer for Rhys. He is doing better today, except he is very restless. The nurse said he's been awake since she got here this morning and he has been fidgeting constantly. It looks like something is bothering him, but his oxygen is in the 60% range, his blood pressure is good and he is peeing a lot. His O2 saturation keeps dropping, but then it comes back up again. He's getting ativan and a little extra morphine to help calm him down. His vent settings are down a little, but he didn't respond well to constant tweaking in his first days of life so we'll see what happens on his next blood gas (which is due soon). I know we've said it before, but it is strange adjusting to every doctor's method. Maybe this is Rhys just getting back into the groove with his original doctor.

Please put in an extra prayer (or ten) for Rhys

We need everyone to send up an extra prayer for Rhys. He isn't responding to the combo blood pressure meds and he is at 100% oxygen. He didn't care for the ultrasound earlier today and they haven't been able to lower his oxygen since the tech left. Right now his saturation is in the mid 90s, but earlier it was all over the place. They are talking about giving him more blood to try to help his blood pressure, so please let that work. I'd love a smallish roller coaster to replace this great big one we're currently on. *sigh*

On another note...

I thought I would give you all a good laugh. I brought (my Sheltie) Rollie to get groomed this weekend and this is what I came home to. Apparently she got in the flower beds one too many times and had a few tangles in her coat. I think the only thing that would be better than this picture is if I had one for you to see what she looked like BEFORE she was bald.

Welcome back present

I guess Rhys wanted to give his original doctor a big welcome back, because he's keeping him on his toes. Rhys' blood cultures came back negative so antibiotics have been suspended (thank goodness). They were going to resume feedings today since his tummy did not have an infection, but now we have new issues so still no more milk. Rhys' urine output has declined to basically zero and his blood pressure was still low this morning, so we've added back the two blood pressure meds we'd previously gotten rid of. The doctor said this might be because he just finished the 10 day course of steroids for his lungs and his body is responding to no longer having that steroid. Now they've also started him on a 3-day course of a lesser strength steroid for his blood pressure that he's had before and responded to. He required ativan this morning to help him relax because his O2 saturation was falling into the 50s and 60s when the nurse touched him. His oxygen is around 85% today, as compared to 60% yesterday. He has also received a saline solution to try to help him pee and it was successful so they are going to give him a second one. He is about to get an ultrasound on his heart to check out his PDA so hopefully he'll handle that well. It's quite possible I've forgotten something, which wouldn't be hard to do since there is a lot going on with little man right now.

Day 32

Well much more of the same today. Rhys likes to snooze alot and he will definitely let you know when you've interrupted his comfort. He LOVES his tummy time. His blood pressure was on the low side today and the doctors have their eye on it but are not doing anything about it just yet. They want him to correct it himself first. He is getting his lasix treatments twice a day for his lungs. Lasix is a diuretic that is supposed to get the fluid off his lungs. The problem is he is not peeing! We need little man to pee for us. I gave him 3 pep talks today to encourage him to pee. I hope he got the message and pees for us tonight! The doctors are going to resume feedings tomorrow and we are happy for that, Rhys needs to grow! Candice and I can't believe there are over 100 votes on the poll. We had no idea so many people were reading it! We are just amazed and thankful for everyone's support and prayers. Trust us, they have not been overlooked! We need to keep praying for his lungs to get better and for Rhys to grow new healthy lung tissue.

Happy 1 month to Rhys

Today our little man is one month old. One of his favorite nurses is back this weekend and he's getting some tummy time right now. Rhys' belly looked suspiciously swollen last night, so the team ran some blood work, drew more blood cultures and temporarily suspended feedings. The x-rays only showed "gas" bubbles, but they want to give him a little break just to make sure. His blood work results looked like he may have the beginnings of an infection so they started him on antibiotics as a precaution until the blood cultures come back. He also received some blood last night so this morning and he is nice and pink.

Rhys' original primary doctor is back on call today and he just made the rounds. I would say the conversation was neutral, nothing necessarily good (other than Rhys is still with us) or bad. The previous doctor had restricted Rhys' fluid intake to try to keep some of the fluid off his lungs; however this doctor says he isn't going to grow on limited fluids so he is going to increase his fluids and start a round of diuretics at the same time. He said it is just going to continue to be ups and downs, but we "are used to it". Thanks!

Little man is still snoozing

The last two days have been decent. Rhys really seems to like his high oscillator settings, but they make me a little (okay, a lot) uneasy. We have reversed the previous trend of better days than nights. His last few days haven't been horrible, but apparently his afternoons/nights are better so they try to turn down his vent settings, but then they go back to where they were the next morning because he doesn't like them. His O2, which is currently in the mid 50's, has ranged from 40% to 80%.

This is day 4 or 5 of consistent sleep, for which I am unbelievably grateful. He desperately needed to quit squirming and get some good rest. Now, he will occasionally crack his eyes to check something out, but for the most part you can't even get him to open his eyes when he is being turned or having his diaper changed. This, however, does not prevent him from letting you know he isn't happy. That's my boy! His feeds increased from 4cc to 6cc yesterday, and increased again to 9cc today. FANTASTIC! I pray throughout the day that he continues to stay strong, tolerate his feeds and grow like a weed so he can have healthy lung tissue. They should weigh and measure him again this coming Monday so hopefully he's made a little progress.

At last glance there were over 70, no make that 80, votes on Cody's poll. All I can say is WOW, where did all those people come from?!? Please continue to help us pray for Rhys' continued and full recovery.

Rhys' first photo shoot

Just wanted to share with everyone that Rhys had his first professional photo shoot today. He behaved the whole time (slept) and his stats remained at good levels despite him being moved, positioned and disturbed. In fact, his levels were SO good (he was stating 100 on his oxygen saturation for most of the two hours) that his oxygen went from the 70% range all the way down to 41%. Wow, and he is still stating 100! His O2 hasn't been this low since he's been on the oscillator. I wonder if he is trying to give us an indication of his future career? I told the photographer that she is going to have to come up here every day if he is going to respond this well.

Rhys is 4 weeks old today

I can not believe it has been that long already since our boys were born. And, I can not believe we've been camping out at the hospital for nearly a month. Rhys gave the team a little excitement last night when his breathing tube came out. This apparently happened around midnight and they didn't want to call and scare us so they waited until this morning to tell. They say there were no issues getting it back in and he is none the worse for wear, so I am thankful they didn't call because I'd have probably freaked out seeing the hospital number on caller id. They think the tape around his mouth was loosened and it eventually worked its way free, so now the tape is on there good and his little cheeks are squished. He still appears to be resting well and not fidgeting. His feeds are still at 4cc, though the doctor mentioned possibly increasing them tomorrow or Friday. I am very excited he is tolerating his feeds, it gives me hope that he will gain a little weight and grow new, healthy lung tissue.

Today is also our 3 year anniversary! Rhys (with a little help from Grammy I suspect) had a card for us when I walked in today. He was even thoughtful enough to put his feet print in there. :o)

Rhys has another primary nurse

So Rhys' primary nurse count is up to three and we love all of them! And he does too! It's great when he has a primary nurse on shift, so with three in rotation hopefully that will be more often than not. Rhys needed a little more pressure on the oscillator today to open up some areas of his lungs that weren't staying open on the lower pressure. His O2 was about 88% when I got in this morning, but is about 50% right now. Based on the latest chest x-ray and O2 level they have decreased the pressure slightly from what it was this morning. His milk feedings are up to 4cc since he has been taking them well. Dr. Gloom said today that Rhys is a fighter (which we all have known). He says we need new, healthy lung tissue to grow, so if we can get his feedings increased so little man can gain some weight we might have a "fighting chance". At this point we are praying that we avoid infection, that little man does not fall back to square one when the steroids are finished, and that he can tolerate the increased feedings to allow him to grow so his little lungs get better.

Lastly, cowlick or curl? Look on the top picture, on the front right portion of his head. Previously we thought maybe it was just stuck from the tape that held down the IV he had in his head. The nurse cleaned that though and the curl still remains. Cody got funny and has added a poll at the right side of the blog, so cast your vote!

Day 26

Well today was much more of the same for Rhys, which is good. He is only getting blood gas tests every 12 hours now instead of every 3 or 4 hours. He likes his Zaky and looks like he is catching up on some sleep. He also appears to be doing some more newborn baby behaviors. He yawns when he is tired, he stretches, he cries (though you can't hear him), and he poops now. Apparently the nurse had commented in her notes that it was "extra large", so obviously as a dad I am very proud. He continues to put down the breast milk 3cc's at a time, and he measured in at a solid 13 1/4 inches. We also noticed that his primary doctor is back from his vacation. We saw him in the hallway but he wasn't caught back up to speed yet. Hopefully tomorrow he will come by and let us know what his professional opinion is. Keep up the prayers, they are working! Sorry for the late post!

New pics of Rhys

Rhys discovered the Zaky today and from what I've seen he loves it (is is lying across his legs in the pics). He is much more calm and has been relaxing since we got here (thank goodness), except when the nurse had to prick his foot. The head IV and right arm arterial line are gone so little man can move a little easier. He was all kinds of comfy when we got here this morning. He is getting blood gases only twice a day now and the nurse explained they are watching his stats to see how he is responding to the oscillator settings vs. drawing blood every 4-6 hours to test. He also got a pacifier today and seemed to love that as well. He is still breathing over the machine, but doesn't seem to be fighting it as much. Since the head IV came out today I noticed what looks like a little curl up on top of his head. I can't really tell if it is a curl or cow lick, but little man would be one lucky fellow to get mommy's hair. :o)

Still making some progress

Little man is still making a little progress. We were told the first 24 hours of the steroid sees the most effect. He made fantastic progress yesterday and is still making little forward movements today as well. This is a 10 day course of steroids, so the hope is that they can get him off the paint shaker and onto the traditional ventilator while he's doing well. My concern is that when the course of steroids are over that he will be right back at square one. I am told this is a possibility, but again that the hope is he can "catch up" while on the steroids. I am hearing a bit of differing opinion on the PDA, one doctor sounds like he would like to close it while another seems to think it isn't a huge issue right now. I am interested to see how that pans out in the coming days.

Today the oscillator settings are down a bit more, he had a great blood gas at 1pm and his oxygen is up a bit (but that is to be expected since his vent settings are lower). They are feeding him again today, 3cc this time, and the first feeding he tolerated very well. Cody and I have changed his diaper several times today and he is doing great with the urine output; however as we have mentioned previously he does NOT enjoy being messed with. If he could cry he would have been screaming at both of us. His little face got beet red and his lower lip was quivering. Poor little guy just wants to be left alone. But, one of his favorite nurses is back on shift tonight, so I know he is excited about that. Oh, and daddy read him a story that I know he loved.

Today was a better day

Thank the Good Lord and thank everyone else for their continued prayers. Rhys has responded amazingly to the steroid. His oscillator settings are down significantly from what they were yesterday and his oxygen is below 60% for the first time since I can't even remember when. His O2 saturation is in the mid 90s as well. The steroid has caused his blood pressure to increase, which they expected, so he is taking meds for that but overall much better than yesterday. They have sent off another blood culture to check things out, but they think the last two days was related to inflamed lungs and not an infection. He was started on antibiotics again (3rd round) as a precaution. He has been very alert and moving today, almost too much, and required another dose of ativan to calm him down. I just changed his diaper again and saw the closest thing to cry he can come up with. Poor little guy was all comfortable when nurse and mommy had to mess him up. Check out this beautiful baby boy with his stylin' gel pillow and trucker blanket.

Rhys gave us another scare today

Little man took two years off my life span today (and gave daddy a few more gray hairs). The doctor called this morning to get permission to give him steroids because he was on 100% oxygen and his stats were falling. You know it's not good news when the doctor personally calls you. Cody and I rushed to the hospital thinking the worst, but once we got here we were able to get the rest of the story. He was doing poorly, but the doctor said he'd been sicker (i.e. early last week). The steroids will hopefully help reduce the inflammation in his lungs so they are less stiff and can open and oxygenate him better. Since we've been here they've been able to decrease his oscillator settings a little (better than the previous two days where they kept going up) and his O2 saturation has been in the mid 90s so they have been able to wean him down a bit on the oxygen. They also gave him one dose of the paralytic this morning to help get his stats up, but that is mostly worn off now. He is still sedated to keep him relaxed, but he is moving and checking things out. They have also started him on another round of antibiotics in case this behavior is a reaction to an infection. Please help us pray that Rhys keeps responding to the treatments he is given, mainly that the steroid works and will make his little lungs stronger.

Rhys is 3 weeks old today

I walked in this morning to see both Rhys' eyes open! What a surprise. He is still holding his stats without his paralytic, and they started feeding him milk today. This is great because he will get the antibodies from the milk and hopefully get some good calories so he can grow. They are starting with 2cc per feeding and he's getting it four times today. Hopefully he will be able to tolerate it. Little man is still fighting the oscillator and they keep cranking up his settings. They are higher than I've ever seen them and that is very bothersome. I really don't like the results of the new doctor's decisions, but I have been told that he is one of the best.

Okay...

... so maybe I didn't want to hear the doctor's view on things. This is a new doctor that relieved Rhys' primary/head neonatal team doctor and I'm not sure what to think about him. Maybe this is Dr. Gloom. He didn't tell us anything we didn't already know, but somehow we left the conversation feeling completely defeated. If I hear one more time that my child is fighting against the odds or that he is going to potentially be deaf, blind and/or developmentally challenged I am going to scream. I almost feel like they are trying to convince us to give up. I am counting down the days until the old doctor returns and Rhys gets one of his primary nurses back. I am convinced he can tell a difference, he always does better when his cheerleaders are around.

Rhys' status was the same story when we left this afternoon. The oscillator settings just keep going up, but he is no longer on the paralytic. He is moving a lot, his stats are good, but his blood gases aren't reflecting this. He hasn't had anything to remove the fluid on his lungs for the last day or two, so they gave him a dose when we left to see if that would help oxygenate him. The doctor mentioned possibly putting him back on the paralytic if his 10 pm gas didn't come back better. So, good day yesterday, not so good today. It is getting hard to deal with all the different approaches each doctor has. Since there isn't a textbook answer to any of this they all have a different method and it is frustrating when one doctor's decisions seem to gain progress and then another doctor takes over and stirs things up. I am praying for a little peace of mind tonight and restful sleep. I am exhausted and Cody goes back to work (again) tomorrow.

Day 20

We camped out at the hospital last night just in case the weather prevented us from getting to the hospital today. Cody is up here and is getting to spend some more time with little man because of the rain.

Rhys is still off his paralytic and trying to adjust. His oscillator settings are back up, so I am wondering if this is still considered progress? It's great he hasn't needed the paralytic to keep him from dropping his stats (small victory), but now the settings are back up. I realize they can't keep him paralyzed forever, but when I see the doctor again I want to get his view of things. I guess if they want to wean him back down to the traditional ventilator and keep him off so many meds they have to start somewhere. The idea is to see how he responds by allowing him a chance to recover on his own without the help of the meds. He isn't totally melting down when he is handled and his O2 saturation is hovering in the upper 80s and low 90s. He is moving a great deal and is actually breathing over the oscillator. Again, this isn't good while on the oscillator because it goes against the way the machine works, but it's great he is trying to breath on his own. Instead of the paralytic they are increasing his morphine as needed and giving him ativan to calm him down. He had another transfusion started this morning and this time he has an IV in his head. I am really glad I wasn't here to see that one put in!

Daddy is back at work today

Well, today was Cody's first day back to work after the big event. I think he was a little sad to not be spending the day with Rhys, but he called this morning and Rhys was having a good morning, so I think that helped.

When I got here today I was met with all sorts of busy activity in the pod. Rhys' paralytic has been discontinued for now to see how he responds without it. Little man must have been tired of sitting still because he is moving all over the place. Every once in a while it looks as though he is taking a really deep breath, but I don't think that is so good because it works against the oscillator. He has lost a bit of weight, but that is a good thing because his swelling is going down. Since he hasn't had the paralytic for nearly 12 hours his oxygen is back up, but I heard the doctor say that if he can retain his current oscillator settings and get the oxygen back down they might could go back to the traditional ventilator. That is great they are even thinking about it! Let's just hope he handles these changes well and doesn't give daddy any more gray hair.

Another day...

Last night Rhys had a few bad gases and his oxygen was up again this morning, but the day nurse got him weaned back down to about 70%. Again, today was much the same as yesterday. The oscillator settings seem to mostly be staying put. A new doctor is on call now and we were told that even though Rhys' blood gases weren't completely holding steady she wanted to see what he could do on his own without tweaking. As we have mentioned before, Rhys doesn't seem to care for change, so this approach was interesting to us. His blood gases were good while we were there today, and he only had one minor change (for the good) right before we left. His head sores look a little better since he has his gel pillow and has been rotated consistently from his left to right side. Any sore/open wound is a concern since that is always a potential for infection so they are all taken seriously. I got to change his diaper again today and boy are his little legs skinny. He weighed in yesterday at 1 pound 14 ounces, though a lot of this weight is due to the fluids he has pumped into him. His little eyes are moving beneath his eyelids and you can tell he really wants to open them. Every once in a while you can see him raise his little eyebrow and I can imagine him blinking and squinting. Stability (relative to what we were dealing with earlier in the week) is great, but we are still praying for any improvement that will allow the doctors to address his PDA. We need continued forward progress to allow little man to get better.

Daddy got to help today

Cody got to help Nurse V- today and boy was he excited. He got to lift Rhys while the bedding got changed. And, with a little direction from the nurse he volunteered for his first diaper duty! Sorry for the glare, the lighting got in the way of the picture.

Day 17

Well, much of the same today, he seems to mostly be holding steady. His oxygen is at 65% and they have only made minor adjustments here and there to his oscillator. He has a spot or two on the back of his head that is something of a bed sore. They try to rotate and move them often to prevent this from happening, but I guess there is only so much they can do. He now has a gel pillow to try to make him more comfortable and I must say he looks much more comfortable than he looked yesterday.

Our primary nurse is back on duty for the next three days and I am very happy about that. I wasn't too thrilled with the way he was handled yesterday. As Cody mentioned in the previous post he has something attached to every limb and it weighs him down. Since he is paralyzed he moves very little, and does not have the opportunity to move his arms/legs on his own, they basically stay in the same position the nurses leave them. His primary nurse is very careful to make sure his limbs are in the proper position (think fetal position), while most of the others just let them hang at any abnormal angle they fall. I am thinking that could potentially be a problem for his little bones later down the road. Rhys' primary neonatal doctor must live at the hospital. From what we are told they are supposed to have a two week on/two week off schedule, but he has been here everyday since I was admitted on July 16th. He really seems to love this job because he never goes home. He told us yesterday we wouldn't see him for the next 7 days, but guess who just walked in? This is the no-nonsense doctor who always gives it to us straight. We are here so much I think we are growing on him because he smiled at us today!

Lastly, I think Cody and I might have saddled our son with "one of those names". Rhys is a legitimate spelling, it is Welsh, but apparently it isn't as easy as it should be. I was fairly certain we would have to correct the spelling of his name, since it isn't "Reece" or "Reese", but never in a million years did I ever think I would have to tell someone how to pronounce it. We consistently get "Rice" or "Riss" or "how do you pronounce that?" Poor little guy, not only will he have to correct and spell his last name for everyone (you'd be surprised at how few people get it correct), but he is going to have to explain his first name too. Maybe my grandpa Logan (where Rhys' middle name came from) has it right by calling him Little Logan.

Day 16

Rhys is having a better day than yesterday. He is no longer on 100% oxygen, and is weaned down to 65%. The lasix treatments for the fluid on his lungs has worked well, if not too well. His x-ray showed his lungs have cleared up more than the past couple of days, but the drawback is now he is dehydrated and not peeing. The doctors are giving him some saline solution to try and rehydrate him so he will start peeing again. The doctors continue to paralyze him so he won't fight the oscillator. If we can just get him stable enough to get off the oscillator and back on the regular ventilator they can address his PDA. Once his PDA closes we are told we could/should see marked improvement in is respiratory system, and less strain on his heart. Poor little guy has something attached to every limb of his body now, even if he could move he would probably have a hard time doing so! Let's continue to pray for his brain bleed to subside, and for his lungs to get better and for him to get off the oscillator so the doctors can close the PDA.