Monday, September 29, 2008

Another good day today

Rhys had another good day. He slept very well, was relaxed and didn't require ativan. His arm board came out yesterday so he has been able to move his arms freely like he loves to do. He gained some weight last night and now is 1560 grams (3lb 7oz) and 16 inches long. He is a bit behind on the weight portion of the growth curve, but he didn't start milk feedings for several weeks after birth and his lung condition hinders him a bit as well. They are going to monitor him for another week or so and see how much weight he gains. Depending on what they see they might increase his calorie fortifier. He is now at 27cc per feeding, so we're closing in on one ounce (30cc)! He still loves his milk and seems to get a little crabby when it's time to eat. He is taking his pacifier like a champ lately too and that is a great thing.

The doctor rotation changed again today. His primary neonatal doctor is off and who I previously referred to as Dr. Gloom is back on. I respect this doctor and think he's good, but I still prefer to let Cody speak with him and just listen in. Cody chatted with him today and he had good things to say about Rhys. He is happy with his progress from six weeks ago when last he saw him and thinks Rhys has come a long way. The fact that Rhys' brain bleed seems to be resolving and hasn't caused swelling in his brain is very encouraging to him. His strategy is to keep weaning Rhys off the vent and let him pack on the pounds. At this point potential infection is Rhys' greatest challenge other than his lungs so please pray from Rhys to stay healthy and free from infection, and continue to gain good weight and grow like a weed!

Saturday, September 27, 2008

V Day

Yes, they're really watching TV.

Somehow he worked his arm underneath the tubes.
How he managed this is anyone's guess.

How will anyone ever be able to discipline this child
when he looks so cute? I can hear it now... "But Mom!"

Well, it's done. Rhys received two of his three vaccines today - the 5-in-1 vaccine for diptheria, tetanus, pertussis, hepatitis B and polio, as well as the pneumococcal conjugate vaccine (PCV). The haemophilus influenzae type b vaccine (Hib) was on back-order so I guess he will get that once it comes in. The needles were tiny and he barely noticed the shots, it definitely hurt us more watching it. Immediately after Cody got to kangaroo, and then he and Rhys enjoyed some bonding time watching football. In case you're asking yourself "is he really watching TV?" the answer is yes. My brilliant other half has the computer rigged to turn on the cable box and watch from his computer. It's pretty nifty.

Other than that nothing super exciting to report. The inspriatory pressure was increased to 20 (up from 17) and all other settings are the same. His O2 has been in the 50s most of the day and he still has his arm board and IV from the blood transfusion. Take a look at the picture of him lying on his tummy... the boy means business. He loves to stretch his arms above his head and somehow he managed to squeeze his arm board under the vent tubes. He is such a worm. He is weighing in at 1480 grams (3 pounds 4 ounces).

Friday, September 26, 2008

Quick update

Yesterday was good for Rhys. He received a blood transfusion because his levels were on the lower end of the range. It's been nearly 3 weeks since the last time he needed blood. Today, much of the same, however they decreased his inspiratory pressure from 19 to 17. He has been squirming a lot and is now able to lift his entire head up for a second or two. This only serves to move him into an uncomfortable position and further aggravate him. He still has his IV and arm board from the blood so he isn't able to move his hand like he likes to do. The boy has quite an attitude when he gets mad. He was throwing some serious fits today. Tomorrow he will be getting his vaccines. Oh boy!

Wednesday, September 24, 2008

10 weeks today

This pic is from right before we left. Rhys was very restless after
his eye exam, so I rubbed his head a little (which he seems to like)
and he found his fingers and started sucking on them.

Little man is 10 weeks old today! Wow, where has the time gone? He was having a little problem breathing last night and his blood gases weren't good so they increased the settings on his vent a bit. He is now at 30 bpm (up from 25) and inspiratory pressure of 21 (up from 18). He needed a few albuterol treatments to help him breath a little easier, and also got a dose of ativan to help him relax. He looked so pathetic today at lunch. He was lying on his Zaky and just looking like he was so sad. He was so zonked out he didn't even notice he was having blood taken for another gas. Rhys needed the rest though, he has been restless too much for my comfort the last few days - he's burning those valuable calories!!

His echo results revealed no changes from the reading in late August. So awesome, thank you Lord! The PDA is still small and his heart isn't enlarged. The eye doctor came by this afternoon as well and Cody was there for his exam. I got there as she was finishing her report. We were so worried about his eyes based on previous exams and the fact that she wanted a follow-up visit so soon. The doctor said Rhys' eyes look good and she assured us she wouldn't just tell us this to make us feel better. She will continue to follow him closely with weekly visits, but as of now his eyes are "growing" properly so please pray this continues. Again, THANK YOU LORD! God has smiled down upon Rhys with positive EEG/echo results and eye exams this week. We are so grateful.

Vaccines were brought up again today. We spoke with Rhys' head neonatal doctor about them this afternoon and I think Cody feels better after the conversation. The doctor told us he wouldn't recommend the shots if he didn't feel Rhys was in a position to handle them. So, we are planning to sign the consent on Saturday so we know we'll be there and also so we know he will have a familiar face in his weekend nurse. I'm sure the doctors and nurses think we're crazy for worrying so much about our son being stuck with a needle, after all most of these kids get stuck more in one day than most of us do in a whole year. :o)

Tuesday, September 23, 2008

Not much is new

Rhys was a little better today. His O2 was in the 60s, though was knocked down to the 50s before we left. He is still desatting on and off, but thankfully hasn't dropped his heart rate again that I know of. He got hot again today in his isolette so they switched the setting back to where the bed regulates its temperature based on how hot/cold the baby is. Previously the bed was on the constant temp setting to allow Rhys to regulate his own body temperature, but since he was getting too hot they switched him back. They don't normally do this, but it is an attempt to keep the nurses from having to constantly tweak his temp setting, to keep his heart rate from increasing when he gets hot and to try to prevent him from having to be moved to an open crib before he reaches 1800 grams. Rhys also had another echo today to check out the PDA and heart. Sometimes the PDA causes one side of the heart to enlarge and pump harder so they want to make sure this isn't happening with Rhys. They also want to see if the PDA is still open, closed, large or tiny, etc. They think his desatting might be related to the PDA. If his PDA is still open this doesn't mean he would necessarily need surgery, but if he did need surgery he is in a better position now than he was a month ago.

The last few days Rhys has been very alert. He will have his eyes open and just look around for 10-20 minutes at a time. He seems to be taking it all in. He also has figured out how to get his thumb in his mouth to suck and he looooves the pacifier. He can mostly do this now without desatting, though he still has a bit of trouble. During his echo today he was very calm (except at the end) and didn't need his oxygen bumped up. This is amazing since he hasn't previously tolerated the echo very well. Still no follow up eye exam, I will ask again tomorrow. Oh, and he is 1410 grams today (3 pounds 2 ounces).

Monday, September 22, 2008

Mom's first day back at work

Today was my first day back at work. Overall, not too bad. I am very close to the hospital so I can easily visit at lunch and after work. We'll reassess my thoughts on work once I get fully back into the swing of things and have to think business on a regular basis.

It was hard to leave at lunch today because Rhys was at 90% oxygen (down from 100%!). Last night he had a few episodes of desatting and dropping his heart rate. A few times he had to be hand bagged to bring up his sats. His vent tube wasn't taped very well so they corrected the position (it was too far in) and taped the heck out of it to keep it from moving. The nurse today said he hadn't had any more episodes of dropping his heart rate since the tube was repositioned, but he was still occasionally desatting into high 60s, which is better than dropping into the 30s! He did require a little ativan today, but that seemed to help him relax enough to calm him down. Needless to say we are holding off on the vaccines until he feels a little better.

His vent settings were increased a tiny bit. One increase was related to the pressure at which the machine helps him take his spontaneous (breaths he takes above the vent) breaths. Think if you were trying to breath through a straw. It is more difficult and requires a greater amount of effort. Rhys' vent has support that helps him when he breathes on his own and this is what was increased. His albuterol is now at every 6 hours and they are assessing his caffeine dose because the doctor doesn't think he's maintaining a constant level of bpm over the vent. Actually I don't think we've mentioned this before, but he is getting a maintenance dose of caffeine to keep him consistently breathing over the vent. So much for not giving him sodas. I asked the doctor if this was Rhys being lazy and he got a good laugh and said it was him acting his age.

EEG results are back and they are clean thank goodness. No signs of seizure activity. The eye doctor hadn't rounded on him when we left this afternoon, but I am hoping she was going to see him tonight. I am anxious to see what this exam reveals. The last notes I saw were stage 2 ROP in both eyes. Again, this isn't surprising, and it doesn't necessarily mean he will need surgery, but he is definitely in the high risk category. They are also increasing the calories in his milk. He will now have his milk fortified to 27 calories per ounce instead of 24.

Cody and I are starting to feel the exhaustion of the NICU. I felt a huge wave today. We are so happy that Rhys is doing better, but it is so mentally exhausting having to live this life. No one truly understands unless they've been through it. You can try and you can think you understand, but unfortunately you just don't. I am also tired of seeing every pregnant person in the hospital and every twin stroller. A twin came into Rhys' pod yesterday. I saw a little girl with a "thing 2" shirt on in the hall (Dr. Seuss, incidentally the theme of one of my baby showers that would have been in August). A lady in the elevator today commented on a set of twins who'd gotten off at the previous floor. How crazy that must be and how much of a handful and how much trouble they were. It took every ounce of restraint I possessed to not rage at her. It is times like this that I especially miss Bentley. I miss him as our second child, but also I miss him for what he would have been to Rhys. It just doesn't seem fair because I did everything right in my pregnancy. I took care of myself and of the babies and of my body and look what happens to me when there are idiots out there who beat and neglect their children. I know I shouldn't but I get so angry at the people who have it so good and just don't appreciate it. Why do bad things happen to good people? I have seen that countless times in the relationships we've formed in the NICU. Parents who desperately want their babies and tried so hard to get them, only to have them born much too soon. It just is not fair.

Sunday, September 21, 2008

Weekend update

Still no word on Rhys' EEG results, though the doctors have said more than once he has exhibited no signs of behavior indicative of seizures - they just want to rule this out. Hopefully we will get them early this week. The doctors wrote the order for Rhys' vaccines today, but Cody and I haven't consented yet. I think the plan is to sign it tomorrow so they can send to the pharmacy and allow the nurse to get them in time for me to kangaroo after they're administered. I'm not looking forward to these shots. The dose is the same as a "normal" 2 month old that is 4x heavier. That is a lot of drug to inject into a tiny 3 pounder. Rhys is not going to be happy.

Rhys is still dropping is O2 sats, he's back and forth from 100 to the 40s and then back to 100. Now he is also dropping his heart rate while he does this. Not so exciting to see your child turn blue and then watch his heart rate drop from 180 to 80 in a matter of seconds. This is apparently not uncommon for preemies born at his gestation, but it is still a little freaky to witness. He is still getting hot frequently and is requiring the isolette "doors" to be opened to cool him down. The nurse last night got very concerned that he was getting a fever so blood work was ordered, but came back fine. We've mentioned before that they like to wait until the babies are 1800 grams (4 pounds) before they remove them from the isolette, but we're hearing he might have to be moved sooner if this continues. The real concern is that he will burn valuable calories regulating his body temp. MY other concern is that he will be exposed to everyone touching him. Contact infections are a big deal in the NICU and even though I might be wrong I feel like the isolette prohibits people from wanting to reach over and touch.

Rhys had another eye exam last Thursday, with a follow up in 2-4 days. She saw the beginnings of ROP, which isn't good, but nonetheless isn't a surprise. We are in good hands with the eye doctor so I am confident she will be able to keep him from having major eye sight issues later on. As is true of most of the others, this doctor is one of the best.

Friday, September 19, 2008

Day 65

First let me say that Mommy had nothing to do with the previous posting of unflattering pics. :o) And in case you haven't picked up on it Cody has a gift for creating his own unique vocabulary, so you're not alone if this is the first time you've heard mention of Rhysenstein.

Today was more of the same for Rhys. Still no word on the results from his EEG. His inspiratory pressure is now at 18 (down from 20) and he is holding at 25bpm. He is getting really good at pushing his tubes around. He likes to get his hand up underneath them and then stretch and push out. Not to say he exactly knows what he's doing, but he does this quite often. He is also very much a wiggle worm. He is constantly fidgeting and working himself out of his contained/tucked in positions. He is also trying really hard to move his head more than I'm comfortable with - especially when we hold him. We're hearing "extubation" mentioned more frequently now, so we're headed in that direction. Hopefully little man can maintain his progress and we'll get there sooner rather than later! Hope all is well with everyone who stayed through Ike. We finally got power late last night and even though we didn't have damage it feels like we have so much to do.

Thursday, September 18, 2008

It's alive... IT'S ALIVE!!!

Say hello to FrankenRhys

What have Candice and I created?!?! It's a MONSTER!!! Rhysenstein!
Actually Rhys had an EEG today to look at his brain activity to ensure everything is working fine since his brain bleed several weeks ago. We should get the results back in the next couple of days. The doctors want to make sure he is not having any seizures, so they can rule that out as a possibility for him de-satting. The doctors want to single out his lung damage as the culprit for his de-satting. This is just a preventative measure and not a reason for alarm. However, as you can see it is not very fun to look at or watch! He did NOT enjoy having this done! On other news, his primary doctor made the comment it was scary how good Rhys is doing, which made us uneasy and the doctor quickly reassured us it was a good thing. His breathing rate was again reduced from 30 bpm to 25 bpm. The doctor said it is almost time for the breathing tube to come out, and we have "push" him while we have the chance. Whew! this is all just craziness how well little man is doing! It seems we are holding our breath for the roller coaster to change directions. Keep praying for Rhys' continued improvement and his EEG to reveal no seizure activity!
On another note we finally got power back tonight! woo hoo!

Wednesday, September 17, 2008

Today marks week 9

Well today little man wrapped up week 9 with a bang. He had a whole lot of vent changes today and he seemed to handle them well. His breathing rate was reduced from 34 bpm to 30 bpm and his airway pressure was reduced from 23 to 22 then to 20, which is good news. He is starting to get hot inside his isolette which means its almost time to change to an open crib. He needs to be 1800 grams (4 lbs) before this can happen. He weighed in at a hefty 3 lbs today so he is on his way! It won't be long until he needs to change his ninja bear's belt color!

Tuesday, September 16, 2008

Happy 2 months to Rhys!

Well today Rhys is 2 months old! We can't believe it has been 2 months. On one hand it seems just like yesterday the twins were born, but on the other hand, we can't remember what life used to be like. Rhys had a good day today and is resting comfortably. He got to kangaroo with daddy today and he was out like a light! No issues with de-satting today he has been fairly consistent with his oxygen requirements. The doctors mentioned increasing the amount of calories in his milk instead increasing the amount of milk he gets each serving to try and pack on more weight. They don't want to give him any more volume but he needs more calories to meet his weight gain goals of 30-60 grams per day. Currently he is at about 20 grams per day. He is starting to get a little bit hot inside the isolette and the nurses are thinking he may go to an open crib soon. He can regulate his own body temperature a little better now and doesn't need the heat from the isolette. We are both excited that he can change beds, but we are nervous about him being out in the open and exposed to potential infections and other baddies in the air.

Sunday, September 14, 2008

Day 60

Well, last night Cody and I slept at the hospital.  To give an indication of how tired I was, I slept better on the waiting room floor of the NICU than I did on a comfy couch the night of the hurricane.  I woke up way early this morning, but was able to go right in and visit with Rhys.  Cody on the other hand doesn't sleep very well any where other than our house, so he didn't get much rest.

Today started off much like Friday when Rhys had his little episode.  Since he had such a great day yesterday they decided to wean on his albuterol.  Rhys wasn't thinking that was a good idea so shortly after the day shift nurse came in he freaked out, kept dropping his O2 saturation and was quickly changed back to his previous dose of every 2 hours.  He was mostly good the remainder of the day and even got a little kangaroo this afternoon.  His personality is really shining.  Cody and I stare at him all day long and laugh at his behavior.  He gets his pouty lip when he's upset at having his diaper changed, he halfway peeks an eye open when you talk to him, and he will put a hand over his forehead or stretch into his superman position when he's really relaxed.  We are also seeing signs that he might become a thumb-sucker.  He gets his hands right up to his mouth and starts sucking, but he hasn't quite figured out the thumb/finger in the mouth bit.  But he's getting close!

We found out today that the eye doctor saw Rhys last week and no one told us.  She apparently came in on the night shift after we'd already left the hospital, but I'd think that is something the nurse from the following day could have seen and mentioned.  This was his first appointment, so we don't know exactly how it works.  The concern is ROP (retinopathy of prematurity), which is basically where preemies' eyes develop outside the low oxygen levels of the womb.  As is the case with lots of preemies, they require help with their lungs and also higher amounts of oxygen.  When we mention Rhys' oxygen saturation it is important that he oxygenates his body well on the lowest oxygen percentage possible.  The ROP develops when the high oxygen levels cause tiny veins in the eye to spiderweb and potentially cause blindness.  We are told the eye doctor working with the preemies is phenomenal and does her job very well.  Rhys has a follow-up appointment next week, which could be a little worrisome that she wants to see him again so quickly.  I believe the typical follow-up is two weeks.  He should be seen again on Wednesday so hopefully I can get more information.

Also mentioned today were the upcoming 2 month immunizations.  They go by actual age for these and not adjusted age.  I was quite shocked to be honest and hadn't given it much thought.  They rattled off what I consider a huge list of what they want to immunize him for, things I know we were never given.  It seems like they have a vaccine for everything these days, even chicken pox.  Since when did having chicken pox get so bad?  Or are parents just lazy today and not wanting to worry with it?  (btw, that is not a jab at anyone who might have given their child a chicken pox vaccine)  Cody and I weren't planning on giving our kids vaccines for anything unessential, but now we have a drastically different situation (i.e. an immune impaired child) so we're thinking he needs all the help he can get.

Sorry, still no picture updates.  We consolidated our bags last night when we went into the hospital and we left the camera in the car.  Rhys sure was looking cute though in his scary dinosaur shirt.  :o)

Saturday, September 13, 2008

Still loving Ike

Well it is no fun living without electricity as many have discovered. I will freely admit I am spoiled to it. Last night was doubly hard. First because Rhys had an episode yesterday and we weren't capable of getting to him, but secondly because the storm came in during the night. It is one thing to be able to see the destruction, but it is a little freaky when it is pitch black outside and you can hear the constant howl of the wind. We stayed at a friend's house and shared in the misery loves company thing. Cody and I slept (I use that term loosely) downstairs in the living room and were awakened many times by the noises from outside. Luckily our friends only had minor fence damage, and our house came out completely unscathed. Not sure how that happened, but I am certainly grateful. I was sure our fence would be gone if nothing else. So now we wait for power to be restored. For those not living close it is a total mess around here. Tons of trees and power lines down. Business have lost lettering and windows and parts of the buildings. Not sure how long it will take to get everything back online.

We made it to the hospital late this afternoon to check on Rhys. I wasn't sure what to expect, but the calm emergency room was definitely not it. The hospital is still on lock-down so all visitors have to go in and out of the emergency room. It wasn't nearly as chaotic as I would have imagined, I was thinking something from Grey's Anatomy. :o) Anyway, Rhys is doing much better. The nurse said he is having as good a day today as his bad day was yesterday. *sigh* Big relief. He is now 2lb 14oz and he looks so big. He got to wear his clothes for the first time yesterday. His super tiny preemie clothes look so small until you get them on him and they swallow him. Our camera is currently in the car, so we will post pics of that tomorrow. He is still the poster child for the Zaky, and now he is using two of them, one to lay on and the other to support him. Anyway, just wanted to give everyone a quick update. Cody and I are both exhausted and seriously looking forward to having our power restored so we can rest up. It is challenging enough to live the NICU life, but to throw a hurricane into the mix is beyond crazy.

Friday, September 12, 2008

More fun with Ike

Rhys decided to shake things up for the nurses last night - he pulled out his vent tube. Okay, so he didn't muscle it out himself, but I'm sure he helped it. I am guessing the tape got loose again and combined with his moving so much and grabbing onto his tubes he extabated himself around 3am this morning. They ran several blood gases to make sure he was okay after his ordeal and he recovered enough for them to knock down the pressure on the vent by one. Today he is apparently extremely moody and has required quite a bit of morphine and ativan. He's been on his tummy since that usually allows him to require less oxygen, and he's trying to push himself up. He was on 100% O2 this morning after he lost his tube and he'd been knocked down to 80% after the sedatives kicked in and he relaxed a little. They upped his albuterol treatments from every 6 hours to every 2. That makes me nervous, why all of a sudden does he need it that often? They just ran a blood gas and his CO2 was in the 80s - not good. Immediately after his albuterol treatment his O2 can be decreased to the 40s so it's good the albuterol is working, but what is going on? The nurse said that sometimes the babies react to the barometric pressure so I really hope that is all it is.

Sheesh, what timing. Since Rhys had been doing well for the last week and we got kicked out of our hotel near the hospital, Cody and I decided to stay at the house vs piling in on top of the crazy amount of staff in the NICU. Big mistake. Now I am stressing about the fact that we won't be able to get up there for at least another day, if not more. At least Rhys has his weekend primary nurse there for the storm. I know she's taking good care of him.

Thursday, September 11, 2008

Stinky Ike

Well, so much for having a hotel room in the medical center. Cody and I had a hotel booked at the Marriott across from the hospital for the next few nights, however after they let us book very late last night AND check in around noon today they kicked every one out. I understand the need for safety of employees and customers, but the hurricane has been headed towards Houston since at least yesterday morning so why let everyone rely on the hotel only to be told to leave after they get settled? They nicely told me they could put us up near the ball park, but they didn't have an answer on how that would help me get into the flooded medical district to see my child in the hospital. Brilliant!

Another good day for Rhys. No changes to the vent today, but his blood gas was good this morning so they are going to try to sneak in and wean down his pressure by one early Friday morning and see how he handles that. We saw his primary neonatal in the hall today (though he isn't on schedule until the second half of the month) and he smiled at us and said "he's looking pretty good". Rhys is now on no morphine, except as needed. He is so funny to watch and it is amazing to see his personality coming through even at this stage of his life. He doesn't open his eyes so much except when he's really awake (usually after he's been moved and well messed with). Occasionally he'll take a peek for a second or two and then squint his eyes really tight like he didn't like what he saw. Most other times he raises his eye brows reeeeally high like he's in the middle of a dream and almost waking up. I could stare at him all day long. He is going to be a handful for certain.

Wednesday, September 10, 2008

8 weeks today

Today Rhys is 8 weeks old. Such a short amount of time, but without question the most significant and demanding of our lives. I might have said it before, but Cody and I cannot remember our life without the NICU.

Rhys continues to make progress. The doctor is very happy with how far he's come. His vent settings are at 31bpm and the pressure is the same. The doctor said she was going to make one more decrease on the bpm setting tomorrow and then try to start weaning the pressure. Rhys' feeds are at 24cc, so he's getting close to one ounce (~30cc)! Since he isn't getting his sedatives he is much more feisty. Apparently he gets that from me? :o) He was seriously attacking his tubes today and was sucking on them like a pacifier. He squirms a lot and moves enough to get himself in an uncomfortable position. It almost seems like he's frustrated that he can't move more, but I am not really sure he is capable of that emotion right now. Anyway, another good day for little man. We are preparing for the hurricane that seems to be determined to keep inching its direction towards Houston. So, for everyone in the potential path of the hurricane stay safe!

Tuesday, September 9, 2008

Day 55

Much the same today. Rhys' vent settings are unchanged and his O2 was in the low 60s all day. We're noticing his O2 is usually higher when he is not on his tummy, but 60% still isn't that bad for him. His weight is currently 1260 grams (2lb 12oz) and he is about 37 cm long (14.6 inches). He got more kangaroo today as well (two and a half hours worth!). He is getting better about not desatting significantly every time he is messed with or moved, but that isn't to say he doesn't make the nurses do a bit of a dance. He was able to be moved from kangaroo today without having his O2 knocked up for the transition.

Rhys' morphine has been decreased from every 6 hours to every 8 hours, so they are still making progress with the weaning. He also had a little time with his pacifier. The nurse said he really seemed to like it, but when he started desatting she had to take it away.

Monday, September 8, 2008

More Progress

We call this his superman pose. He raises his hands above his head a lot
when he sleeps. It's really cute when he is so relaxed.
Rhys has had an amazing couple of days. So good it's almost scary - like it's TOO good. Hopefully you enjoyed the 30 minutes worth of bath time. :o) Cody was very excited to post the clips. The best part? Lotion! He was in desperate need of a little lotion on his crusties and he's looking much better.

Rhys is still tolerating his feeds very well and he is up to 23cc every three hours. In addition to the caloric additive his milk is now being fortified with phosphorous and calcium for his bones. Does anyone notice anything different about little man's arms? Anyone?? To those who answered "he has no IVs" you are paying attention! They removed the IV used for the blood transfusion, but that's not such a big deal. The big news is that he no longer has a PICC line. He lost his two remaining med pumps for the versed and morphine yesterday so they were able to remove his PICC line. At one time he had 8 meds going into the PICC line so this is amazing, NO PUMPS! This eliminates a source of infection, and we're happy he no longer needs it. His O2 today has ranged from 40% when I got here to about 65% after his vitals were taken and diaper was changed. The vent rate is down to 34bpm (wow!) and the pressure remains the same. I was told they are going to try alternating between lowering the pressure and rate settings a couple of times a week. We're very excited at his progress and hope he keeps it up. Please continue to pray for little man to stay strong and keep making forward progress.

Sunday, September 7, 2008

Rubber Ducky you're the one, you make bath time lots of fun!

Today we gave Rhys a bath! Check out the videos there's a bunch of 'em! More Kangaroo time for daddy today as well. We were greeted with lowered vent settings today, which was a pleasent suprise!

More bath time

More bath time

More bath time

Saturday, September 6, 2008

Sweet baby boy

Big goings on in the pod today for little man. His vent pressure was reduced to where it had been previously and his breaths per minute went down to 40. You heard me right, that is a four followed by a zero. This might not sound like a big deal, but for Rhys it's fantastic. His vent settings were never this low prior to the paint shaker. And, his O2 was slightly less than 50%. Again, amazing for Rhys.

He got more kangaroo today as well, nearly three hours worth. He was mostly good though he desatted a few times, but I think his tummy is bothering him a little. And, nurse was able to suction up a good amount of gunk from his lungs. Overall a great day for us at the NICU. Tomorrow we are going to try to give him a bath if he is up to it. We went and bought him some lotion tonight. His Nonna (my mother) has reeeeally been wanting to lather him up with lotion since he has all his little crusties. I opted for the organic variety and got laughed at. The way I see it, at this point this is one of the only things I can control so nothing but the best for my baby boy.

Rhys also got some visitors today, cousins from Nacogdoches. They brought him a gift from Build-A-Bear. This is his TAMU ninja (really karate but ninja sounds better) bear! Cody has decided that at each of Rhys' milestones in the NICU we are going to upgrade his belt. Now he is a yellow belt and when he gets to come home he will progress to a black belt. Whoop! Also, he recently received TWO of his very own Zakys from SP (you know who you are). He says thank you, thank you, thank you!

Lastly, please pray for Olivia and Parker. Olivia recently underwent eye surgery and Parker is currently battling an infection. And thank you again to all who read and follow Rhys' blog, especially those we've never met who are sharing their similar experiences. Words can not describe the connection you feel with others who've ridden the NICU roller coaster. We've been amazed at the number of people logging in and blessed by your support. Keep the comments coming, we love to hear from you all.

Friday, September 5, 2008

Day 51

He's eating and resting peacefully...
and then he starts crying and is just so upset.
(and this was a very mild upset with no flailing arms)

It's getting really hard to sit here and watch my baby scream. I think it is worse that there is no sound that accompanies it. For the last two days he has been crying on and off for a good portion of the day. And this is the lip quivering, big gulps of air crying that makes him look terribly distraught. The doctors said everything looks good, his blood gases are okay, so they think he might be having "withdrawal" issues from having his sedatives decreased. They didn't wean any more today to "give him a break".

He received more blood today, although I'm not sure why. He just had a blood transfusion a few days ago and they are only doing labs once a day now so I was surprised he needed more blood already. At least this time the IV is in his hand and not messing up the other foot. I will have to pay more attention next time because I should have noticed his little foot tilted at the wrong angle and made someone fix it. The pressure is up a bit on the vent, but all other settings are the same. I guess we're starting to see the effects of discontinued steroids, though his O2 is in the 50s, which is great for him. He's still on scheduled doses of albuterol, full feeds and they are starting an oral steroid to see what that does for him. Yesterday they were able to suction a huge amount of what I will call gunk from his lungs. Hopefully the diuretics, albuterol and tummy time are helping to loosen some of the nasty stuff that is hindering his breathing.

Thursday, September 4, 2008

Day 50

Rhys hasn't been so happy today, he is acting fussy. His O2 right now is 61%. He sats 100 and then 5 seconds later he is in the 50s, only to come back up to 100 again. It could be because they are continually decreasing his versed and morphine - they had to give him a dose of ativan last night. But, maybe not, who knows? His weight is up to 2 pounds 11 ounces (1210 grams) as of the last weigh in, so he's moving in the right direction. They removed the IV from his foot, yea!, but now his little foot wants to turn outwards at nearly a 45 degree angle. Poor little guy can't win. I was told he got a very good bath last night, and as far as I know that was his first. His skin is nice and soft, and his hair is a little mussed but the cow lick/curl is still there. :o)

His vent settings are the same as they have been and the doctors just made the rounds and are pleased with where he is at. His x-rays are now scheduled for Mondays and Wednesdays only, instead of once a day. And, they have started what the doctor called chronic diuretics, instead of the occasional lasix which is used to treat acute conditions. He is also taking treatments of albuterol every six hours. We've mentioned previously that his last dose of steroids was yesterday, so please pray that he can handle everything without requiring more.

What else can I tell you...? Oh, there was just an almost emergency in the pod and it was very reassuring to see that (literally) a dozen doctors, nurses and respiratory techs made it into the room in less than 15 seconds.

Wednesday, September 3, 2008

7 weeks old today

Today Rhys is 7 weeks. That is quite an accomplishment for our little man. He now weighs 1170 grams (2 pounds 9 ounces), which is just shy of 2x his birth weight. His O2 is in the 50s this morning and his vent pressures are the same. He is still taking the feedings well, which the doctor said is a huge plus in his favor. His current calorie intake is about 120 calories per kilogram per day, but they are talking about possibly trying to bump it up a little to help him gain some weight. I really like this doctor, even though yesterday she called him Riss and today he was Ryan. :o) I understand they see a lot of babies (there have been +/- 100 babies on this floor since we've been here) and you can't expect them to remember all the names. She still gives it to you straight, but her delivery is more positive.

Oh, Rhys has been upgraded to the preemie-small diapers instead of the XS. They are a little big, but the others were getting a little tight.

Tuesday, September 2, 2008

New doctor rotation for Sept

It's tough being Rhys...
More time with the Zaky (he is going to be
dragging this thing around for the next three years)
Rhys is doing well today, though he is nearing the end of his steroid course. I am a little worried at what is going to happen when the steroids stop since he's been dubbed "steroid dependent". There is a new attending and fellow doctor on duty and that makes me nervous for the transition period where they learn their patients. This attending was there during their delivery so she at least knows of us (she remembered Cody).

Today they decreased the pressure a small amount again and his O2 is up a bit to high 60s/low 70s. They continue to decrease his morphine and versed and he seems to be taking that well. He is a sensitive little guy and still doesn't care to be messed with, so I think it's good they are able to wean on his sedation. His milk is up to 20cc per feed, and he has little to no residual which is fantastic. Little man likes to eat! He had two really dirty diapers this morning so his tummy is feeling much better I'm sure. No kangaroo yesterday or today. He has an IV in his foot from his blood transfusion so I haven't asked about it. The IV makes me nervous. I know I didn't like anything touching my IV so I would rather not mess with him while he's got one.

Monday, September 1, 2008


Well, the nurse practitioner came to check little man out and she couldn't find anything. She said he was looking good, lungs were sounding good, etc. They switched out his O2 saturation probe, changed his diaper and repositioned him. That helped a little - he slowly started to creep back down a bit, but he was still on very high oxygen relative to what he had been the last few days.

Around 5pm he got fed again. After his feed was finished the nurse changed his diaper and it was a massive dirty diaper. I would say it could easily be considered a blow out in preemie terms, I think some even ended up on his blanket. His O2 is now in the low 60s and I bet his little tummy is feeling a lot better. He still has a little roly poly belly so I am thinking there might be more to come.

Labor Day

Rhys was doing great when we came in today. His levels and vitals were good and his O2 was 55%. He was sleeping very hard and looked very relaxed. He received a blood transfusion over the night shift and his versed and morphine continue to be decreased.

Seemingly out of no where he started desatting and his O2 has continually needed to be increased. He is at 95% oxygen now, the highest it has been in days, and he is only satting in the 80s. Typically, even when he is resting well he stretches a lot and moves a bit. He has hardly moved since we got here, maybe only to wiggle his toes. The nurse says everything looks good and he doesn't act like he's getting sick. He is tolerating his feeds well (which are up to 19cc), and she says not tolerating feeds is usually the first sign of a baby that is getting sick. I am just nervous that he has had kangaroo for three days and I don't want him getting an infection. Here we go again....