Thursday, February 26, 2009

Our Mr. Popular

He thinks he's Mr. Popular, and he also thinks he is a big boy who doesn't have to mind his Mommy! Today he hasn't eaten much (again!) - I think we are at about 7 ounces for the whole day. *sigh* We are going to get his Synagis shot tomorrow so I am sure tomorrow will be no better in regards to eating. I just wish I could figure out why sometimes he sucks down 5 ounces and other times he plays with the bottle. I am convinced he knows what he's doing.

Cody and I put Rhys in his pack-and-play to sleep last night for the first time since our initial attempt when he came home. He slept great really, except when Cody got up to leave for work and then Rhys got in bed with me. He also took his naps in there today and slept longer than his typical 20 minute cat nap. I am hoping this continues and we can permanently get him out of our bed! When he gets off O2 we will transition to his room, since it is on the opposite side of the house and it is too hard to move the O2 concentrator back and forth. He weighed 11lbs 3oz on our scale this afternoon before his bath.

Today I am: 7 months, 1 week and 3 days old
Adjusted I am: 3 months, 2 weeks and 4 days old

Wednesday, February 25, 2009

Therapy again

Today we had PT again and Rhys did very well. The PT keeps saying how much he's progressed in the few short weeks she's been working with him. He is almost rolling over from his back to stomach (basically he can get about 2/3 the way over), but he still hasn't figured out how to get his arm out from underneath him. He constantly has his hands in his mouth now and he is trying more and more to put things in his mouth, but he still isn't 100% coordinated enough to hit the mark and this makes him frustrated. His head control continues to improve and he is sitting while assisted quite well. As I thought, he is quite the chatter box since he started talking - and this is something else I can say he gets quite honestly.

On the flip-side of PT we had a pretty terrible session with speech today. He didn't want his bottle at all and was pretty fussy from the prior hour of PT. Speech recommended forgetting the spoon for the next week and letting him explore food with his hands and let him make a mess! The concern is that he might develop an aversion to things being on his face or near his mouth since he's had the cannula for a while and has made it his life's mission to get it off his face and out of his nose. Yesterday and today I have left the tape off in an effort to make this somewhat better. It is only a little harder to keep in his nose, but he doesn't seem to fight it quite so much even though he still wants the prongs out! So, we are going to strip him down to his diaper and see how much of a mess he can make. I am thinking it will take him a while, since it took him a while to relax with the bath and get his hands in the water. Oh well, gotta start somewhere.

Lastly, I have noticed in the last day or two that Rhys is startling very easily. This has never been a problem being that he spent the first 5.5 months of his life surrounded by the constant noise of beeps, buzzers and talking. Is this normal? Anyone??

Tuesday, February 24, 2009

TV Junky

I think my son is becoming a TV junky. More and more I am noticing that he watches the TV, doesn't really matter what's on. This morning we had a little bit of cereal (with a spoon woohoo) and I left him in his bouncer to clean up. When I came back in this is what I see (you will just have to trust me that he is looking at the TV). Cody also tells me that when he rocks him in the afternoons Rhys is very focused on watching whatever it is that is on at the time. Oh boy.
We are also having more and more difficulty keeping the cannula on. Rhys' poor face is completely torn up from him ripping off the tape. He hates it. I hate it. I keep trying to tell him if he'd eat like a big boy and gain some more weight we could get rid of the darn thing for good!

We have another PT appointment tomorrow, followed by a speech therapy session. Last week Rhys wasn't interested in eating for the speech therapist, so she didn't get to see much. A lot of times Rhys is so nosey he is more interested in the new surroundings/people than eating, so it's anyone's guess if he will cooperate tomorrow. Even making sure he's super hungry doesn't work. The boy wouldn't eat if he didn't make him anyway. He was wide awake at 3:30 this morning and only wanted an ounce. Then when we woke up and got moving he only wanted two ounces this morning. If you interrupt his eating at all you might as well pack it up, so we have become really good at keeping his attention on the bottle for as long as it will hold. When it works, it works and he'll take as much as 4-5 ounces. If not, good luck getting him to quit playing with it!

Oh, I have noticed that Rhys is finally looking at his hands. It's kind of funny because he doesn't really pay attention until he grabs for something and then he's like "what's this??" and then brings it to his mouth to start eating it. I have also realized that he sort of laughs. It isn't a full on laugh, and he hasn't squealed yet, but he sort of gives a ha-ha. My little man is getting so big.

Today I am: 7 months, 1 week and 1 day old
Adjusted I am: 3 months, 2 weeks and 2 days old

Johnnie and Crystal Fields - Hey guys, of course we remember you!! Hope you guys are doing well! How can I get in touch with you? I'd like to see pictures of your little guy!

Sunday, February 22, 2009

Rhys' new partner in crime

We have a new addition to the family. Rhys' cousin Isaias was born February 19. The little guys will be close in age and no doubt get into all kinds of trouble together. This is proud mommy, Kim and her bundle of joy. Who else looks this good after giving birth??? If she weren't my cousin I'd be jealous. :o)
Yummy hands! I love my crazy hedgehog! I have discovered my jumperoo! I don't quite know what exactly I'm supposed to
do with it, but I DO know that I can sort of hop around while I'm in it!
I am still a few inches too short, so Mom helped me out with a pillow under my feet!
Rhys is doing great. The therapist says he is making great progress. I think part of it is the therapy and the other part is that I might have been expecting too much too soon. Whatever it is, I can definitely tell a difference in Rhys the last few weeks. He is growing so fast. Next to his new cousin he is a giant! It makes it easy to recognize how much he's grown in the last few weeks. He got to see two of his primary nurses this week, which is always fun. I love to bring him up there so they can see what their job is all about. Rhys is at that hard age where he isn't content to just sit and do nothing, yet he is still a little young and unable to do a lot of things he desperately wants to do. He is getting better at supporting himself to sit up while assisted, but he obviously can't do it yet on his own. I always tell Cody he'd be running around the house already if he was able... he so wants to be a mover!

Today I am: 7 months, 6 days old
Adjusted I am: 3 months, 2 weeks old

Monday, February 16, 2009

7 months old

Happy 7 months to our little man! Rhys saw the pulmonologist today and is doing very well. We still need oxygen, but his lungs sounded great and he is satting 95-100% with O2, and 88-89% without it. They wrote for a pulseox at our request so we could spot check him at the house, and also ordered a chest x-ray to check his lung progression since discharge. I didn't take Rhys for the x-ray yet because we'd been there more than 3 hours by the time we were finished with the pulmonologist and his regular pedi visit and he'd had enough. He was hungry and tired so I will bring him back this week to get his x-ray. We also got rid of the apnea monitor, so one less thing to carry. Woohoo! We will go back for a pulmonologist follow-up in two months at which time they will see if they are able to do anything with the O2. The doctor mentioned that there is a test they can do to make sure he's ready. She is referring to a sleep study they require to release the kids from oxygen. I have big problems with the potential of this sleep study, I think it's completely unnecessary, and will fight that one when we reach.

Rhys weighed 11 pounds with his clothes on today, so minus the few ounces for his clothing he has gained almost a pound in the two weeks since we started thickening his milk. He also measured 22.8 inches long, but I am not sure how reliable that measurement is since they basically marked his length on the exam table paper and then measured. That would be great if it were correct because it'd mean he's grown almost an inch in three weeks!

Pictures to come... for some reason it won't let me upload anything right now.

Today my adjusted age is: 3 months, 1 week and 1 day old

Oh, one quick last thing. While Rhys was still in the hospital I went crazy and bought him all sorts of nifty toys I thought would help him with his textures, etc. I ended up with this crazy looking hedgehog that is a million different colors and has felt "quills". Every day Cody and I have been working with Rhys trying to get him to grab at his toys and start holding and bringing to his mouth. Today I grabbed the hedgehog because it was on the coffee table and he started grabbing at it and touching and trying to bring to his mouth. I almost cried. Proud Mommy moment!

Thursday, February 12, 2009

Therapy update

So, we went to the PT yesterday for our second visit. Rhys was a totally different baby. He was not having a good day the first visit, but this visit he was much more cooperative and did things for her that he didn't do the last time. He even gave her a smile or two, and Rhys has been pretty stingy with his smiles - only really smiling a lot for me and Cody. She said she was very "encouraged" by his session this time, though she never said anything negative after the first visit that would indicate he was severely lacking. Anyway, he is doing good things, a lot of which I think surprised her based on the first meeting. He is self-supporting himself a bit when in the sitting position, he is getting better at lifting himself on his arms while in his tummy, and he is getting better at not tilting his head back as much. We still need to work on interaction with toys.

Next week, in addition to the PT, we are also going to have a speech consult to see about the previous feeding issues. Rhys is eating SO much better lately, but I still don't think he is quite taking the volume he should be. He has increased significantly from what he was taking when we brought him home 6 weeks ago (gosh has it been that long), so we're making progress, but I still don't think he is where he needs to be. Cody read somewhere that babies that have/have had significant chronic lung disease can have problems putting on weight because of an increased metabolic rate. That combined with the fact that it is difficult for them to take the required volume sometimes makes weight gain difficult. From our scale he is gaining .5 to .75 ounces per day, which isn't much different from what he was gaining prior to us thickening his milk. The differences are (a) he has gained about 11 ounces since we started thickening the milk, but he hasn't increased his intake, and (b) he isn't fighting and screaming through the whole feed which I personally think is the most significant. But, we just started this last week so I am trying to be patient and give his little tummy time to adjust to actually being full!

Also, pulmonology appointment next week. Looking forward to that since we are now up to re-taping TWICE a day!

Today Mom tried Baby Einstein again. This time she put me in my
bouncer (which I usually don't particularly like) and sat it in front of the TV.
Even though I wasn't totally "into" it, it kept my attention for the
whole video!! I think she was excited about that new development.

busy body = tired baby

Tuesday, February 10, 2009

Rhys and Daddy

Rhys and Daddy enjoying some bonding time this afternoon. You might notice we have put a sheet on Rhys' rocking chair in an attempt to avoid his random throwing up from ruining it. :o) So far so good! Not much else to report. We have another therapy appointment tomorrow. I have tried to work with Rhys in the ways I was instructed, but Rhys isn't always interested and can get pretty offended if you don't leave him be. He is still a bit (or a lot) of a whiny baby at times so we're working on that. Most of his crying has to do with wanting attention because he immediately quiets as soon as you pick him up. Again, we're working on it! And, Mommy is working on keeping her sanity. :o)

Today I am: 6 months, 3 weeks and 4 days old
Adjusted: 3 months and 2 days old

Saturday, February 7, 2009

Who does this cutie belong to?

Rhys is getting terrible about pulling his prongs out of his nose, or ripping off the cannula all together. We are having to re-tape at least once a day. He got the whole thing off a minute ago so I grabbed my camera for a picture of the clean face. Is everyone else's kiddo this bad about keeping the thing on? He has several ways of getting it off... he rubs his head to get the prongs out, he sticks his little finger underneath it near his nose, or he out right rips the tape off his face by grabbing one hand on each side. The latter is the preferred method because it comes completely loose. Silly boy, he is such a mess. Since we don't have a pulseox at home I have no idea what he is satting, but he has yet to turn blue!
We started with the loose tape last night.
It came off this morning so Mom put it back on.
I got a little cranky so I just ripped it off again tonight.
Fish lips.
Really Mom, isn't that enough??
Fine, one more.

And, look what I did! Mom helped me by putting
the rings on my hand, but I finally figured out
I was holding something! Mom really wants a repeat!

Friday, February 6, 2009

GI update

After lugging myself and Rhys to the doctor's office this morning we find out from the pediatric GI doctor that (what else?) he "looks great"! I know it sounds like I want something be wrong, I reeeally don't, but this kid isn't easy! The doctor said everything looked good with the swallow study/upper GI and he almost sounded like he didn't think Rhys had reflux based on Rhys' history and I what I told him. But, he said since the prevacid and thickened formula with cereal are working then keep on. Apparently, they typically don't recommend cereal in the bottle for kids with reflux because it is a texture of sorts that can irritate the throat, but he understands these kids aren't textbook. He also said not to even worry about the Simply Thick and just use cereal. I am not sure about that because that would mean a lot of cereal to get the milk to the consistency Rhys likes it.

Rhys is FINALLY gaining good weight - today he was 10lb 4oz butt naked! That is up from 9lb 13oz at the regular pedi the other day (a little discrepancy since they aren't the same scale). Hooray for weight gain. We're closing in on the coveted 5 kilo mark, which every doctor always says is the point at which these kids just take off and do great things. I will be expecting some magic!

Thursday, February 5, 2009

Good morning from Rhys!

Little man isn't such a morning person, but he says GOOD morning just the same. So, here's what is going on with Rhys the last few days... We took him to the "regular" pedi on Tuesday after an all-out refusal to eat. We've been seeing the high risk clinic pedi since discharge because we thought it would be easier at the beginning to not have to shuffle back and forth, but we didn't anticipate all of these feeding problems. So, we decided to get a second opinion of sorts about Rhys from his regular pedi since maybe a fresh opinion that doesn't treat him as an escapee from the NICU would be helpful. We brought him in and again, she too didn't seem overly concerned about him not wanting to eat. He looks "so great", which we love, but sometimes wonder if that keeps people from seeing he really might have a problem. She referred to him as a picky preemie and suggested we try more of the rice cereal approach, sort of like get him to eat however you can. The high risk doctor stressed the rice cereal only by spoon, but then I started thinking... WHY?? At this point I think it is more important for him to eat than learn how to use a spoon so I added some cereal to his bottle, used the Y cut nipple and wouldn't you know he sucked it dry in about 12 minutes with no arching, no crying and no fighting. He ate so good on Tuesday, continued to eat great yesterday and so far this morning. I am really hoping he just needed his milk a little thicker. I am going to get Simply Thick so I don't have to keep adding cereal to every bottle. They tried the Simply Thick in the hospital and it was a disaster! But, thinking back on it I believe it was probably because the nipple flow was entirely too low and he couldn't get anything out of the bottle. The milk consistency right now isn't nearly as thick as what it was in the hospital and he's doing perfectly on the Y cut nipple.

Not only is he eating better, but he's sleeping better too. The last two nights he's slept for nearly 8 hours. He's had a few wake-ups where he whines a little, but a little patting and the pacifier gets him back to sleep. The poor boy doesn't know how to act with a full tummy....he's been starving for 5 weeks!

We saw a new therapist yesterday, at the recommendation of a fellow preemie mom, and I loved her. Night and day from the other person in terms of the preemie knowledge. It is a bit of a drive, but totally worth it. She was very thorough and great with Rhys. We will be going once a week for a while and once we are moving in the right direction we will scale back to once a month. She said the main thing he needs to work on is the muscle control under his chin, and also interaction with toys, which is something I'd noticed he wasn't really into. Other than that she thinks he looks good. Someone mentioned having a therapist come to their house, but the only people I know who come to the house is ECI. We have a therapy consult with them in two weeks, but they don't come as often as I feel Rhys will need so right now we are sticking with outside therapy until Rhys gets to where he needs to be. Also to ease my mind I am bringing him to a pediatric GI doctor Friday to make sure he doesn't have any other feeding/stomach issues going on that we're not aware of.

Yesterday after therapy. I got a little grumpy about
half way through my appointment and I didn't want to participate.

Tuesday, February 3, 2009


Big ole' Aggie family.
I like my hands, but I'm not so interested in grabbing my toys yet.
High five Mom! Gosh, I am one handsome fella'!

Today I am: 6 months, 2 weeks and 4 days old
Adjusted: 2 months, 3 weeks and 5 days old