Happy Halloween!

Our little pirate! He absolutely did not share our enthusium for his first Halloween.

So, his first Halloween was a smashing success on our part, but Rhys didn't appreciate his costume so much. He made one heck of a pirate though. The nurses and doctors got a good laugh if nothing else and we will have pictures for blackmail later on. :o)

Rhys' Nonna made him a smaller version of a Boppy pillow. It helps prop him up like a regular Boppy would, but this is the perfect size for him right now to rest on his tummy. It is much more effective than trying to prop him up on rolled blankets and Zakys.

Rhys' EKG revealed NO MORE PDA! Woohoo. It also revealed no pulmonary hypertension which is great news. Rhys' blood pressure is a little on the high side though so they are thinking of giving him medication to control it. His kidney ultrasound revealed no kidney stones, however it did show some sort of enlargement in his ureter (the "tube" that connects the kidney to the bladder). His is a very mild grade so they are going to do a dye test to check and see the extent of the problem. It could be that it regresses on its own, but it could potentially require surgery depending on what they find. The problem with leaving this untreated is that reflux could cause what is in the bladder to push back towards the kidneys and cause an infection. Also, his newborn screen tests, which he's had several times since he was born, showed low levels in his thyroid. The endocrinologist team was called (they've been following him since his brittle bones) and I believe they are recommending that he be started on a low dose to get him where he needs to be. That is the purpose of these screening tests, to catch treatable issues that newborns can have and fix them before they become a problem.

So, enjoy the pictures! And everyone have a safe Halloween!

15 weeks

This is how our little man rolls! He barely noticed today when he was disturbed from his nap so his daddy could hold him. He just kept on snoozing. As you can see he is still on CPAP and his pressure is still at 8. Several people have sort of commented on how high his pressure is. Well, ya know what, he isn't on the vent dangit so give him a little credit!! The good news is that he is tolerating the CPAP very well. Some kids work really hard to breathe on the CPAP and therefore burn calories and don't grow well. That isn't the case with Rhys, he is growing as he should.

He got an ultrasound on his kidneys yesterday to check and see if he has kidney stones. That is something that can happen with the lasix. No word on the results yet. He is getting another EKG tomorrow to check on his blood pressure as it has been high the last several days. Given all he's been through, his BPD (chronic lung disease) and the age he was born this isn't unusual. If they find something they will start him on medication to control it and it is something he will eventually outgrow. This is more of a catch it now before it turns into a real problem. Lastly, he has had some tests run to see about his stomach issues. They are checking: to see if he has a virus (which was negative, though he could have caught a different bug of some sort), if he is lactose intolerant and if he is still okay with the 27 calorie formula fortification. If he is lactose intolerant mommy will have to alter her diet. If he is having problems with the fortification they will drop it to 24 calorie. To get to 27 calorie they add both a human milk fortifier (to get to 24 calorie) and also powdered formula (to get to 27 calorie). His feeds were bumped up to 40cc and he is weighing in at 5lb 6oz again after losing a few ounces yesterday.

I'm having way too much fun finding clothes for Rhys. As you can see from the pictures he has a lot of clothes, and even more that he hasn't worn yet. Between what I buy him and what he's been given he has quite the wardrobe (he's getting close to matching daddy) and is set until he reaches the newborn/0-3 month size. I am making myself stop buying because I know he can't possibly wear so many things, he is growing too fast!

The definition of sprawl

If you were to look up the definition of the word "sprawl" you may find this picture next to the entry.

Day 103

I can lift my head up on my own! Halloween is soooooo scary, I can't look!
Mommy will make it allllllright!

Well sorry for the delay in posting. Today Rhys got a bit too fussy and started de-satting alot. His oxygen is at 100% and he has had 2 doses of ativan to calm him down. The ativan has completely zonked him out and he is slowly recovering. He is still on CPAP so that is good news. We need him to recover quickly so he can avoid the ventilator! He is weighing in at 5 lbs 6 oz and is 18 inches long.

day of life 100

Rhys has been in the hospital for 100 days now. Many of the other preemies' families we've talked to had slightly over 100 days in the hospital. Not so for our little man. He is really no where near going home, however he is still doing well on CPAP. I know you can't compare these kiddos and if you consider he was stagnant in the progress department for 6 weeks while he was on the paint shaker I guess we aren't really that far behind. Rhys' O2 remains mostly around 70% and he still is not desatting like he did on the vent, with the exception of the occasional drop when he gets angry at having his diaper changed. As he lowers his oxygen requirement they can try to drop the pressure of the CPAP (which is currently on 8) and then on to the nasal cannula. It felt like we'd never get to CPAP, but here we are, so I guess we shouldn't be too impatient (but it's really hard, and those of you who know me understand that is not in my nature).

Today he weighed 5 pounds 2 ounces, but he had two really large wet diapers (totaling more than 2 ounces), so he is now below 5 pounds again. The doctors thought he was gaining too much weight too quickly so they lowered his feeds. They had been bumped up to 40cc, but they were knocked back down to 38cc to prevent him from retaining so much fluid.

Dr. Gloom is conducting a study about preemies and their brain development. He approached us and asked if we were interested in participating. This study consists of a high resolution MRI (apparently better than the one he'd typically get) and the hope is that the doctors can learn to identify damaged areas of the brain and provide early intervention for therapies that would keep the kids from long term disabilities. Rhys is at risk for CP and other development issues because of his brain bleed and every other thing that has happened since his birth. He may or may not benefit from this study, but perhaps other kids could later down the road. Cody doesn't see any reason not to do the study. Rhys would receive an MRI before he goes home anyway, but my hesitation is that if they do it soon I would hate for him to have a setback because he got so upset over it. Not sure that would happen, but Dr. Gloom pointed that out and Dr. Gloom being Dr. Gloom also mentioned that if he needed to be reintubated they have the equipment there by the MRI machine. Gee, thanks! Can you give the guy a little credit and quit spreading the bad vibes? Dr. Gloom needs to go get some sunshine. :o) Other than that not much going on.

Rhys' primary weekend nurse is on a much needed vacation so we will not be seeing her this weekend. But, Rhys says hi, I'm hanging in there, have fun and eat lots of yummy food and I will see you when you get back!!

today is 14 weeks for Rhys

Little man is 14 weeks old today. He is weighing in at 4 pounds 14 ounces and he's been so good. His O2 was weaned down to 55% today, which is fantastic for him on CPAP. He got an eye exam today and did very well, only requiring his O2 at 60%. The eye doctor said his eyes look good, but she is going to continue monitoring him until his vessels reach zone 3. Hopefully his good luck with the eyes will continue and we will not have to worry about needing a procedure. Rhys still loves his pacifier, and sucked on it continuously today for nearly 2 hours!

CPAP Day 5 and Counting

Well, little man has officially surpassed day 5 on CPAP. What an accomplishment for Rhys! His doctor gave him less than 25% chance of lasting longer than 5 days, but apparently he forgot to tell Rhys! He weighs 4 lbs 10 oz and is up to 37 cc on his feedings. Apparently his voice is getting less hoarse because little man can make some noise now! Let's continue to pray for his continued success on the CPAP and defy the odds.

Mommy's little pumpkin

Rhys was in the holiday spirit today when I came in. The nurse found his Halloween outfit and oh my goodness did he look cute. This is the first time he's been dressed in a complete outfit. Such a handsome little man. Apparently the word got around because several nurses popped into the pod to check him out. As you can see he got some mommy time today and completely zonked out. I told the nurse that it's like he's a REAL baby - she got a good laugh out of that. Other than when he gets upset at the CPAP getting in his way or having his diaper changed he really is such a good boy. His feeds are now 37cc and he's weighing in at 4 pounds 10 ounces. We're still hoping Rhys' good behavior with CPAP continues.

More pics of Rhys

now THIS is comfortable

what a cutie pie double duty... holding the pacifier and reading a story

taking a break after a diaper change and suction

Rhys is still on CPAP as of 6:30 this afternoon. He had very high CO2 this morning, so they gave him a dose of lasix and his follow-up blood gas was better at 6 p.m., but not exactly where it needs to be. They are going to try again at 10 p.m., so hopefully this one will be better. He is doing great breathing on his own and rarely desats (or if he does it is only typically to high 70s). His oxygen requirement continues to be high, in the 70-80% range, but the CPAP with higher oxygen is still better than the vent with lower oxygen. We are wanting Rhys to stay off the vent completely, but if he does need to go back to the vent (a) this would be expected, and he has surpassed the doctor's expectations already; (b) this is a fantastic start and means he shouldn't have problems with a weak airway and (c) he can do it on his own!!

Rhys is also sleeping very well on CPAP which surprises me somewhat. I really expected him to fight it more than he is, but I am very excited he has adjusted to it so well. He acts as though he likes this better than the vent. Actually, he almost seems like a completely new baby. Maybe it is because we can hear all his noises and his cries now. Anyway, please continue to pray for Rhys' forward progress. We appreciate you all!

baby Max

I called this morning to check on Rhys and he did well through the night on the CPAP. His weekend nurse was super excited to see him off the vent. We will post more pictures today when we go visit. In the meantime, here we are with new nephew baby Max.

So far so good...

As of 5 p.m. Rhys is still on CPAP! The doctor said this is "excellent" and very unexpected. Rhys started out on 100% oxygen and has been weaned down to low 80s. He is maintaining his sats, which is unbelievable! He dropped his sats into the 70s when it was time for his breathing treatment. After the treatment they had to pull out the handbag to bag him back up because he did not appreciate their efforts. The doctor happened to walk by with all the bells dinging. With a laugh he said to me "you didn't think it was going to be easy did you?". To be honest I did not know what to expect, but easy wouldn't have been part of it. Rhys is resting comfortably (well as comfortable as you can be with a wind storm blowing through your nose) and satting in the 90s with O2 in the low 80s. Hopefully he will be able to maintain his progress so he doesn't have to be re-intubated. The ninja bear also got a belt upgrade today to a green belt!

3 months today

Today is Rhys' three month birthday. It is also new cousin Max's birthday. Max was born around 7:30 a.m. this morning and weighed 8lb 3oz. So, he's twice the size as Rhys and he's brand new!

Rhys' vent settings were very low this morning. Pressure of 15 (down from 17), PEEP of 5 (down from 6), rate of 20 bpm and O2 of 33. The rate went to 10 bpm shortly after I got there to sort of test for the CPAP. Rhys only desatted a few times this morning (very atypical) and mostly stayed in the high 80s/low 90s. After 30 minutes at a rate of 10 they pulled the tube!

Rhys has had the CPAP for an hour and a half now. Much to the doctor's surprise, his 1-hour blood gas was good and Rhys is still extubated. The doctor said that "kids who have been on the vent as long as Rhys just don't do this well". So, that is awesome! He told us there is a 25% chance Rhys will stay extubated and it could last from 5 minutes to 5 days. So, he is "thrilled" we are even getting to consider CPAP, much less that Rhys lasted this long. Also, our son has a voice. I heard him cry for just a second when he was protesting the CPAP, but then he calmed down. Every one in the pod looked up at the same time, no damaged vocal cords, woohoo!

I know something is going on...

whoa, what's this? I'm supposed to do WHAT?

awwww man!

is this for real?!?

you've GOT to be kidding!

13 weeks

Today Rhys is 13 weeks old. His vent rate is 20 bpm (down from 28 yesterday), his inspiratory pressure is 17, his PEEP is 6 (down from 7) and the pressure assistance he gets when he takes a spontaneous breath is 11 (down from 15 a few days ago). His O2 was 28 when I came in today, but is now in the low 30s. He has been snoozing since I got here and can not be convinced to open his eyes to say hi. He is getting to be quite the chub, weighing in at just under 4lbs 5oz! The word around the pod is that they are going to possibly attempt extubation tomorrow if Rhys behaves himself. Oh my goodness, is this for real? They are going to do another blood gas in an hour or so and if his gas is good they are going to try a PEEP of 5. I am really nervous about switching to CPAP, but I guess you've just got to go for it (although not irresponsibly as the doctors say). He is still desatting his oxygen, but the doctors pointed out he did this even on the higher vent pressures and settings. So, please everyone pray super hard for this that Rhys gets a legitimate good shot at staying off the vent!

Also, our new nephew (Max) will make his way into the world tomorrow so we will hopefully have two things to celebrate!

Look who got a big boy chair!

Rhys likes the pacifier

Don't I look like a big boy?

This thing puts me right to sleep

Rhys has had a pretty good couple of days. His vent settings are improving... His rate is down to 28 bpm from 40 two days ago. His O2 requirements are down to 35%. The steroid course he is on is really showing the benefits. The doctor wants him off the ventilator in 2 weeks, so he is going to "push" him while he is on the steroids. As you can see from the pictures, Rhys got to sit in a bouncy chair today! He got to spend a few hours sitting, being a big boy. Daddy gave him his pacifier and he really enjoyed it. We also noticed he has a bigger size blood pressure cuff (a neonatal #3!), so his arms and legs are getting some much needed fat. He weighs 4 lbs 4 oz now and is on 34cc of milk per feeding. The eye doctor is supposed to check on him tomorrow to see how his ROP is doing. We are praying for good news!

Also, as a precaution a full x-ray workup was ordered to make sure Rhys didn't suffer any fractures other than his ribs. The x-rays came back clean, thank goodness, and the specialist team that was called in didn't seem worried by anything. They did order blood work to check his levels, so hopefully all will be well. His primary doctor didn't seem concerned and said everything was healing as it should be.

Please keep praying for the steroids to help give Rhys the nudge he needs to get off the vent!

Steroids again

Just hangin' out
(on Halloween blankets from my Nonna!)

I can see my daddy!

A very rare picture of Rhys with no tape on his cheeks
and as you can see he does NOT appreciate their efforts to retape.

I am Rhys...

Hear me ROAR!
(I think this was actually a yawn, as he isn't red)

Rhys has had two good days this weekend. He responded almost immediately to the steroids, which were started on Friday night. They were able to wean a little today on the pressure, but the weekend doctors aren't as aggressive as the weekday doctors so they don't typically try as much. He's had two fantastic blood gases today, with CO2 in the 50s. Rhys is still having tummy troubles and gets very fussy when his tummy hurts. I feel so bad since he is on breast milk and I would seemingly be the one "contaminating" the milk with bad food, but I don't think that is the case. The nurses tell me all babies usually have this problem to some extent, whether they are formula fed or are on breast milk.I was told yesterday that Rhys has two fractures on his ribs. This was news to me, as well as Rhys' primary weekend nurse. I know several weeks ago they were concerned about Rhys' calcium levels that indicated he had brittle bones, and they adjusted his supplements to try to get his levels back up (which they have since successfully done). They think it probably happened prior to this because it appears as though the fractures are "old" and healing properly. I can't imagine having to deal with undiagnosed fractured bones; however if this happened when they think it did he was still on regular doses of morphine and versed.

Rhys is weighing in at 1925 grams (4 pounds 3.6 ounces). Woohoo! We are used to seeing him wrapped up most of the time, but today I noticed he was no longer sporting skinny arms and legs. In as much as he's able to his little arms and legs have filled out. I don't think our rings would fit on his wrist anymore. I would love to get a picture to that effect just to see the difference.

Rhys is starting to stay awake for good bits of time now. Yesterday and today he was awake and checking things out for a good hour at a time. He also has a mobile on his crib that he seems to stare at which is a good sign. We've been told he's acting very "age appropriate", and that is a reassuring. The eye doctor made a visit this week and his ROP has advanced from mild to medium, but is still in stage 2 which doesn't require intervention, and his vessels are growing farther out towards zone 3 like they are supposed to. She will be back next week again to check and see how he's doing. We're still not in the clear yet, but we're moving in the right direction.

The primary doctor is back on tomorrow so I am hoping his aggressiveness benefits Rhys' attempts to get off the vent. The possibility of a soft airway still lingers though, so extubation might not be as close as we would want it to be.

Not such a good day

After so many good/boring days I guess it was time for another bad day. Rhys' O2 had been mostly in the 40s yesterday and the day before, but today I guess he'd had enough. The nurse took his vitals this morning and was never able to get his oxygen back down. He got a dose of ativan, but that didn't help. They increased his vent support, but his blood gases were still bad and his CO2 was still high. After two consecutive gases with CO2 in the 90s they decided to try to switch out his vent tube. They thought maybe there was a blockage, but that wasn't the case, however his follow up blood gas looked better so the doctor was happy. Earlier in the day they thought he might be getting an infection, but a blood work up looked good and he was otherwise not showing any signs of infection. The doctor said it could just be too early for the blood workup to indicate an infection so they are going to continue watching him closely. Rhys also received another blood transfusion (not sure why though, the doctor didn't even seem to understand why the night doctor wanted it) and thought possibly he was having a reaction to it. He said this isn't uncommon in adults, and could explain Rhys' behavior. However, Rhys has never had any reaction to a blood transfusion in the past.

They also started Rhys on another round of steroids today. Oh boy. Rhys has always responded amazingly well when he's on steroids so please pray this is enough to get him off the vent and that he'll need no more! I will update with more info tomorrow and post some new pics.

Also, please pray for baby Olivia and her family. Olivia was born 2 weeks ago as a 24 weeker and she needs a few more prayer warriors.

12 weeks and counting...

Rhys is 12 weeks old today, what an old man! He is weighing in at 1830 grams and has officially surpassed the 4 pound mark (4 pounds 0.7 ounces). Way to go little man! His feeds are at 32cc per feed and he's still doing great with the milk. His O2 is currently 36%. Wow, it hasn't been this low in quite some time. He is still moving like a worm and is getting in trouble because he tries to turn his head. The swaddling seems to be helping with the hands and I am noticing the nurses are paying much closer attention to his tubes and tape.

New Poll

Rhys is still doing well in his new crib. He is maintaining his temperature and seems to sleep quite a bit, which is great. He is weighing in at 3lb 15.7oz today. Not sure where the partial ounce came from, but that is what his sheet said. His milk is up to 32cc per feeding so we're over one ounce!! Rhys also was extubated again last night. Yes, again, only 4 days after the last time it happened. Needless to say the doctor was not at all happy. And to be honest I am not sure how it happened since he has been swaddled the entire time I've seen him the last few days and hasn't had an opportunity to pull on his tubes. So, when the tube came out they replaced it with a larger tube and he no longer has a leak. If we never mentioned it before Rhys had a huge leak with his last tube size and he sounded like a little squeaker toy. For those not familiar, as the baby grows the airway gets bigger and distance between the tube and the airway increases causing air to leak out. This means that Rhys wasn't getting the pressure support the vent was supposed to give him because some of it was escaping. Not to mention that must cause a tickle in your throat. No wonder he got fussy all the time. Rhys also had his influenza shot today, so he's all caught up on vaccines. Woohoo!

We finally have scanned baby pics of Cody and myself, so we decided to see who everyone else thinks Rhys looks like. Personally, I am mixed. On one hand I think there are times he looks JUST like me, but there are others he is totally looking like his daddy. So, let the poll begin! And, please no chubby baby comments. :o) According to my mother she stuck a bottle in my mouth every time I cried, which by looking at these pictures you'd think was every 10 minutes. Haha.

Big Boy Pics

Look! My ninja bear changed his belt from yellow to orange! I like my burrito, but please don't call me Chipotle
I sure look handsome with my combed hair!

Rhys burrito wrap is serving two purposes. First, to help keep him warm in his new open crib, but secondly to try to keep from needing the head harness for a little longer. By wrapping his arms in the burrito it keeps them out of trouble and away from the tubes! He has really seemed to enjoy the burrito wrap today, he has been sleeping nicely since we got here. The nurse rigged a way to keep the blanket on top of the crib to keep the light off his eyes. He still likes to stretch his arms and I have seen him try to break free a time or two, but for the most part he seems to like it. Rhys has also started smiling a great deal lately, which is so cute. I am hoping to catch it on camera soon. I think he's already dreaming of chasing Rollie around the house!

Open Crib

Yesterday Rhys spent his first day in an open crib. They tested him out Friday by lifting the isolette top and seeing how he handled it. When we got there yesterday he was in his big boy bed! He seemed to handle it pretty well considering it is extremely loud and bright without the benefit of the isolette as a buffer. Rhys' ninja bear got a new belt today as well. We're moving on up!

A friend of ours was great enough to come and take pics of little man. Take a look at Rhys' photo shoot from yesterday...

http://sassaniphotography.blogspot.com/2008/10/baby-rhys.html

Excitement in the NICU

Rhys decided it was a little boring in the NICU so he thought he'd extubate himself again and liven things up. Well, he didn't physically remove it himself, but he certainly is the cause of the tape being loose enough for it to "fall" out. This happened around 5 am from what they tell us and it happened while the nurse was repositioning him. Again, he is none the worse for it. The doctor made a point of stressing to the nurses and respiratory team that they need to pay more attention and take more initiative to make sure the tube doesn't come out again - this is the third time it's happened. Rhys' moving around is becoming a bit of a problem. He can lift his head completely off his bed now and would have nearly moved it today from one side to the other had the tubing not prevented it. He is about to be banned from his tummy because in addition to moving his head he is also using his arms and legs to push himself up. When he is on his back he will arch himself upward, but isn't able to move quite so much. The real problem is when the secretions from his mouth loosen the adhesiveness of the tape and then Rhys either starts worming around or gets his hands underneath the tubes and starts pushing. They mentioned having to put some sort of head piece on him today and I know he won't be happy about that.

The doctor is going to try to start lowering the pressures on the vent and see how Rhys likes it. One difference I am noticing about this doctor is that he seems to want a perfect blood gas before he'll wean the settings. The primary doctor will tolerate a slightly "imperfect" blood gas - he is a little more aggressive. If it doesn't seem Rhys is making enough progress they might put him on more steroids. The boy has had a ton already. Maybe that's why he has all those muscles. :o) The doctor also mentioned that he is really close to being in an open crib and there is really no reason he couldn't go to one. The 1800 grams isn't a rule and Rhys is burning just as many calories when he gets too hot as he'd burn if he got cold in an open crib. It is exciting that he'd be making progress by advancing to an open crib, but I think I'm going to have to put a "Do Not Touch the Baby" sign up. I am a major germ phobe and still want as few people touching him as possible.

Rhys is 11 Weeks Old Today

You best not take that pacifier from me!
Oh man, I am pooped!
It's been a rough day, goodnight!

Well today marks week 11 for Rhys. Little man likes to eat, sleep, poop, and de-sat. Not much has changed since Monday. He weighs 1610 grams (3lbs 9oz). His vent settings haven't really changed and his O2 requirements remain in the 50% range. The doctor thinks the reason for him de-satting so much is that he has a soft trachea. The muscles in his trachea are weak and collapse around his breathing tube and thus his O2 saturation drops to the 30s. The albuterol they give him supposedly only makes the problem worse. So it's a balancing act to try and wean the albuterol and keep his airways open. The doctors say the only he can do is to out grow the problem. This means he will stay on the ventilator a little bit longer instead of trying to extubate him and get on the CPAP (which pushes oxygen through the nose).