Wednesday, April 29, 2009

PT and Eye appointment

So I experimented a little this morning with Rhys. I usually let him sleep until just before I am ready to leave for PT. This gives me time to get myself ready, and his things together to get out the door and not be late. The problem with this is that Rhys does not eat immediately after getting up. He needs a good half hour to forty-five minutes before he is in the mood. The only time this rule does not apply is when he wakes up for his one feeding in the middle of the night. Yes, that's what I said, he still doesn't sleep through the night. But that doesn't surprise me given his eating habits. Actually, on the occasions he does sleep through the night that is one bottle he misses, thus decreasing his volume and caloric intake for the day. But I digress. When Rhys doesn't eat before PT he is a big ole fussy pants for his therapist, in large part because he is, you guessed it, hungry hungry hippo. As you can imagine it is hard to get your money's worth when the patient is red faced and screaming. So, today I got Rhys up when I woke up and let him sit in bed watching Charmed while I put my face on. It worked out so that when I was done getting ready he was ready to eat!

In addition to him eating before PT the therapist had also repainted his therapy room and tweaked the lighting. The room was previous a bright yellow with polka dots and was repainted a nice soothing green. Instead of the harsh overhead fluorescent lighting she brought in a lamp and turned the overheads off. When I told her Rhys truly didn't act so horrible for me she mentioned she'd been thinking about his behavior and thought he was probably over stimulated, thus the change in paint colors and lighting. The result? A happy baby boy who was laughing and smiling through the majority of the session. Woohoo!

Among other things, today we discussed Rhys's follow-ups with his various doctors. She asked about Rhys's eyes and whether he'd been seen by the ophthalmologist again. That reminded me it was time to make his one year follow-up with his eye doctor. So when I got home today I called not knowing how long it would take to get in. The conversation went something like this.

Me: Hi, I need to make an appointment for my son for a follow-up to see Dr. H.
Receptionist: Are you a new patient?
Me: No, my son was seen by her in the NICU and he needs his one year check up.
Receptionist: Okay, the first opening is in June.
Me: No problem, that's perfect, he is only nine and a half months old. But, I also have noticed that his left eye twitches a little and seems to turn slightly inward at times.
Receptionist: Let me check, please hold. *holding... receptionist returns* I have an opening next Thursday.

Fantastic! Ugh, hopefully it is nothing. Actually, I am fairly certain this has nothing to do with Rhys being a preemie, and everything to do with the fact that his mom, Nonna and uncle all have a lazy left eye. But maybe the O2 aggravated it. My brother had to wear a patch when he was younger, so I am hoping that is all that Rhys will need (if anything at all). His eye isn't really that bad, but to me it is noticeable and I am pretty sure you have to fix these problems as infants. Truly though, I have no idea what the doctor will tell us, but she is fantastic so I am not worried about it.

Sunday, April 26, 2009

Bath time!

Today I am: 9 months, 1 week and 3 days old
Adjusted I am: 5 months, 2 weeks and 4 days old

Friday, April 24, 2009

Speech Therapy x3

Today we had yet another speech therapy consult to assess Rhys. The difference this time was that the therapist was with ECI and she came to our house. She came way back when we had the first ECI assessment, but we hadn't seen her since. I think she is technically an occupational therapist, but when babies are so young a lot of these things overlap.

I will admit I was skeptical, be honest and tell me what within the government ever seems to work as it should? But, out of the three different ST appointments we've had this was the only one I felt was worth a darn. I will even go so far as to say I was quite impressed and even pleased. She did exactly what I would think an ST should on the first meeting, assuming I'd have known how to articulate as much. She was quick, efficient, knowledgeable and respected Rhys and his quirks. There was no mention of his gagging or reflux except in matter of fact terms, and she certainly didn't bring up genetics testing and his ears being too low.

There was a bit of touching around his mouth to see how he reacted to things in his face. He did great! He smiled when she raked the teething toy across his lips. We then saw how well he sucked (on a finger). As we've been saying, he is capable of doing it and doing it well, but he doesn't do it consistently. We also tried the spoon, but he did his initial gag and pushed it away (he'd just had his bottle and wasn't hungry). At this point she is in agreement that it seemed his gagging might be his new way of telling us he doesn't want it. She said it was great that he liked his hands in his mouth (all the time!), his teething toys (which he is increasingly trying to hold on his own), teething biscuits, and how his jaw seemed to be working (flexibility). He is also able to move the tip of his tongue towards his cheek which is important to to move food around the mouth. Since Rhys has come home Cody and I have tried to make it a point to touch and kiss and rub on Rhys's face to try to prevent potential aversions since he had the tubes and is still on the cannula. She said he looked really good! The only thing he didn't seem to be doing was using his lips. Our homework is to use our finger or a baby toothbrush to stimulate his gums and lips and inner cheeks to try to get him to use his lips in addition to his tongue. Think of when you put a spoon in your mouth you close your lips around to sort of rake the food off. Rhys doesn't really do this. That is also the problem with his inefficient suck, he typically sucks without sealing his lips around the nipple.

As far as the bottle issue goes she basically said what Cody and I have thought all along, it isn't that big of a deal and we've done what we had to do. He won't be taking a bottle forever. So from here on out she will come about every two weeks just to see how he's doing and see if we need more instruction. She will also continue coming as Rhys transitions to sippy cups, straws, and table food.

We also had a play date today at the neighborhood playground. Rhys got to meet the beautiful Ellie, who was adorable, and thoughtful enough to offer to share her drink and the slide with Rhys. Too cute!

Today I am: 9 months, 1 week and 1 day old
Adjusted I am: 5 months, 2 weeks and 2 days old

Tuesday, April 21, 2009

Almost 14 pounds!

Rhys is one half ounce short of 14 pounds. Oh so close!! He has been eating mostly well the last few days, but Cody and I haven't really been stressing it when he doesn't. Of course I'd prefer he ate like a champ all the time, but that is not our reality.

We are still making his milk recipe, which consists of breast milk/formula (I finally quit pumping woohoo, and we are half way through our 2 month+ of frozen supply), Simply Thick, cereal and a tiny bit of either bananas or pears to make it a little sweet (he hates the cereal). As you can imagine this makes the milk pretty thick, so Rhys requires the Y-cut nipple with the hole "enlarged". As a result he has gotten lazy and does more of a licking action to get the milk instead of actual sucking like he used to. We've been aware of this and have known that is what he was doing, but the alternative was that he wouldn't eat enough so we did what we had to do.

Today I decided to see how he would handle plain milk with no thickener. I used a fresh out of the package Y-cut nipple, knowing that he wasn't going to suck properly so I wasn't concerned about it overwhelming him. He actually did great with the milk itself, and showed no signs of hating it like he did when we first brought him home, except that he is lazy and used to not having to truly suck to get his food so he didn't really eat that much. My concern with keeping his milk thickened and using a nipple with a super large hole if he doesn't need it is that he might have problems using a sippy cup and straw later on since he isn't used to sucking. I am very encouraged that he seems to be able to handle the regular milk though. Now I just need to figure out how to make him practice actually having to suck and at the same time keep him eating enough without confusing him. I am unsure if it would be better to just switch it all over knowing he'll eventually start sucking, or let him "practice" once a day or so and gradually switch him over. I have talked to ST several times about his being lazy, but never brought up the potential transition to sippy cup/straw. I guess in the whole scheme of things it isn't that big of a deal and he'll get it when he gets it.

We have PT again tomorrow. We missed last week because my allergies were giving me fits. He still hasn't rolled completely over from back to tummy, but he gets better by the day. He certainly has mastered rolling to his side when trying to escape having his diaper changed. I think he just likes to be naked. He is getting stronger in his torso as well and is able to better sit support himself when sitting. He still can't sit unassisted, though he would do much better if he'd quit squirming so much. We'll see what his PT has to say!

Sunday, April 19, 2009

I have...

...a rant today. Please humor me. In case you can't tell I feel strongly about this, to an amazing degree.

I am beyond annoyed at being criticized for how we keep Rhys isolated from potential sickness and germs. I am completely irritated that we get eye rolls and are given a hard time when we ask people to wash up before holding or touching Rhys. I am seriously tired of others acting as though they are the authority on raising children, and Cody and I are just plain silly. Should I let it bother me? Of course not. But, alas I am human and it does bother me. I am bothered, not by the comments themselves but, by the fact that anyone could truly believe they know better than we do as parents. I am fairly certain every one has an opinion. Every one is certainly entitled to think what they will, but kindly be respectful enough to keep it private. Respect the fact that our children were born 16 weeks too early. Respect that we buried one baby and then visited his brother in the hospital every day for 5.5 months before he came home. Respect the fact that our surviving child has battled things that most people don't deal with in a lifetime and therefore can not fully understand. Respect and allow us to do what we think is best for our child to keep him well and healthy and happy and out of the hospital, and know we do that exact thing for others. At the very least please be respectful enough to acknowledge that we have dealt with a heck of a lot in the last 9 months, with more to come, and we truly don't need anything else added to our plate. Okay, I'm done and feel much better.

On a hoppy, uh happy note, Rhys loves the bunny that came in his Easter basket. :o)

Today I am: 9 months and 3 days old
Adjusted I am: 5 months, 1 week and 4 days old

Saturday, April 18, 2009


For the first time since Rhys's birth I finally see a real end in sight. When Rhys was discharged we knew we had the hernia repair and circumcision dangling in his future. His NICU doctor told us they would want to hold off as long as possible given his BPD because they weren't sure how surgery would effect his lungs. His surgery occurred unexpectedly, much sooner than everyone had originally wanted. While he came through with flying colors he had a set back with his oxygen requirements. Don't get me wrong. I am unbelievably thankful and grateful and blessed that Rhys is doing as amazingly well as he is. And though I never need a reminder I received one the other day. While visiting a friend at the hospital I ran into a former NICU pod roomie's parents. Their little girl was born only a couple days after our boys and she is still in the hospital. Rhys is thriving and we are so lucky. But still, we want the oxygen to go! Mentally I think once it is gone Cody and I can breathe a sigh of relief that Rhys has finally done it. After he's off O2 there is no more "to-do" from the NICU. Rhys will be infinitely more happy when that day comes. As I said, that end is in sight. I hooked up his pulseox today to check his sats and holy moly he is satting high 90s on a half liter (~37% O2, vs. 21% room air) and he is holding mid-high 80s with no O2 at all. I am so hopeful that with a few more pounds he will be done for good. I am encouraged.

Rhys is maturing before our very eyes. He no longer wants his pacifier. This is saying something considering he never refused his paci. It was the one thing that would always calm him down. The nurses in the NICU were very inventive with ways to keep the paci in. But, no more. He is such a chatter box. He "talks" to us and responds when we talk to him. He is now showing more emotion. It is no longer just happy or mad. He expresses frustration and excitement too. He grabs at the pictures on his books, is a master at prong-removal and shoving his bottle away. And, though I still wish he'd eat better, he is getting BIG. He is very nearly 14 pounds. I just realized that in three months my baby boy will be 1. One year old! I need to start planning a party! :o)

Thursday, April 16, 2009

9 months

Happy 9 months to our little rock star!

Tuesday, April 14, 2009

Teething Biscuits

Today we tried teething biscuits (thanks Aunt Amy for mentioning them over the weekend). The immediate reaction I got when I put it to Rhys' mouth (it wasn't even in his mouth mind you) was a gag. Seriously boy, we need to work on that! He licked it once or twice, made an "I don't like this" face and the proceeded to tear it up. I was so excited. Since Rhys isn't all that interested in mouthing anything but his fists I have been worried we were going to have problems with regular food even though he takes a spoon. So, this was a start at least. I feel somewhat better now knowing he actually tried it. He really seemed to enjoy the teething biscuit and even managed to hold onto it for a few seconds, trying to feed it to himself.

Today I am: 8 months, 4 weeks and 1 day old
Adjusted I am: 5 months and 6 days old

Sunday, April 12, 2009

Happy Easter

The Easter bunny was super nice to Rhys this year. He got a portable DVD player and two new movies. If you are saying to yourself Rhys is too young for a DVD player you might be right, but even if it only keeps him from screaming for a few minutes in the car it's worth the price of admission to Mom and Dad. Not that Mom and Dad had anything to do with what the Easter bunny brought Rhys, I am just saying... :o)

Of course it being Easter Rhys got all dressed up in his new Easter clothes. We were feeding him before we walked out the door for lunch and wouldn't you know he threw up all over the place, covering both him and Cody. And we're not talking a little spit up, we are talking I have never seen this much milk come out of a baby spit up. It was like a fountain that kept shooting water. Holy moly. I am wondering if when he has his infrequent, random spit up it is a result of him getting his Prevacid a few hours later than he is used to. This never used to happen before, but it seems that when he spits up I have usually forgotten to give him his meds that morning. Mental note to myself to pay more attention.

Anyway, after the throw up Rhys required a bath, a new change of clothes (as did Dad) and we were ready to go, arriving at our destination an hour and a half late. Sheesh. My allergies also picked today as day 1 of my annual flare up, and my normal wonder drug Zyrtec made me super drowsy so I have been battling a case of medicine head all day long (thus the reason Rhys didn't get his meds when he was supposed to).

My Easter basket from Grammy and Grampy.
Prior to throw up, at least we got this pic.

With cousin Julian, who is showing off his chocolate
bunny. Cousin Max (Julian's brother) is missing, we
somehow didn't end up with a good pic of all three.
This is the first time any of them have met face-to-face.

Friday, April 10, 2009

Big Boy

Our little man finally fits in his big boy pj's (size 3-6 months thank you very much). What a cutie pie. He weighed 13lbs 7.5oz tonight before his bath. I am so thankful for his good weight gain the last week and a half. Here he is trying to stand. Doesn't he look just like me? Haha, that's okay, I won't force anyone to perjure themselves. He loves to put weight on his legs and bounce up and down. He is getting pretty good at it.
Today I am: 8 months, 3 weeks and 4 days old
Adjusted I am: 5 months and 2 days old

Thursday, April 9, 2009

Hooray for Rhys!

This morning Rhys made a happy plate, and a lot of a mess. This is what his plate looked like after he finished his carrots, bananas and medicine.
And this is what little man looked like.

Granted, he didn't start with that much, but he ate it all without fighting me and I was so proud of him. We had to change clothes, wipe him down and wash the bouncer cover when we were done. Now the challenge is to figure out how to get him to take his bottle afterwards. Typically, if he gets any amount of food and then stops for even a short amount of time he is done and wants no more. So, I need to figure out when to start the spoon feeding so that he also wants his bottle. I have tried feeding him after his bottle but he isn't nearly as cooperative as when I do before.

He had PT again yesterday and though he cried nearly the whole time he worked really hard and did a great job. He is oh so close to rolling from back to tummy. He is now working his shoulder when he rolls so it shouldn't be long now. I didn't get to work with him much in the last week because he has been very fussy and has taken a lot of naps. He has also decided he wants to start waking up multiple times a night again. Which means no uninterrupted sleep for Mom and Dad. But, he will at least sit in his pack 'n play for a while entertaining himself without crying. Which is good if you can sleep with all those noises. Unfortunately, Cody and I can't.

Today I am: 8 months, 3 weeks and 3 days old
Adjusted I am: 5 months and 1 day old

Monday, April 6, 2009

Weight gain/spoon update

For real Dad, not tired.

Rhys has gained an entire POUND in one week. He now weighs just over 13 pounds. Not sure where the heck that came from, or how he did it, but we will take it! To put it in perspective, he gained one pound the first four weeks he was home so you can imagine our delight that he has gained one pound in seven days. He has been on the brink of needing a bigger diaper for the last couple weeks, but we have been trying to finish his size 1s since we didn't have many left. Today I looked at him when I was dressing him after his bath and his little size 1s look a lot too tiny. Size 2 it is!

Rhys continues to get purees with a spoon once a day (actually I missed yesterday, oops) and he just isn't in to it. He does it great when he actually does it (sound familiar?), but he keeps turning his head and avoiding eye contact. Again today he started what looked to be a gag but didn't finish it. It was almost like it was his way of protesting because he definitely didn't gag while he was trying to swallow. That is just what we need, him to start gagging in response to different textures all of a sudden. I think he doesn't want to work for it. Hopefully continued practice will make it easier to feed him because at this point I can't imagine him taking a whole meal by spoon. I know it starts like this with every baby, but gosh these smallish things seem like monumental tasks.

The nutritionist came yesterday and she was very nice. She took our crazy milk recipe and told us that while they typically don't recommend cereal for babies at the age Rhys first got them she also understands the need to do what was best for our picky preemie. She calculated it and said that based on the calories in our concoction and the volume he takes he should be getting what he needs to grow sufficiently; however it might be right on the edge of what he needs for "catch up". But she said he will catch up later so not to worry. She is going to come once a month to monitor his weight gain, etc and will also be able to help us pack in calories when he starts eating more regular food. Until last week Cody and I had literally written down every bottle Rhys had eaten since discharge to keep tabs on his calorie intake. I wouldn't call it paranoid, but we just wanted to make sure he was eating what he needed to since we had so many issues in the beginning. We haven't done that since we got back from vacation and it is kind of nice to not stress about it. It is still important for us to be aware of how much he's eating (and we keep a mental daily tally) and make sure he gets enough but he should now be old enough to give us signs of when he's hungry and full. Oh what a fine line... difficult to teach yourself the difference. I read today that 1 in 5 American 4-year-olds are obese. Is that for real? I guess it doesn't really surprise me, but I don't want to that to be Rhys because I force food on him as an infant. So, as long as he continues to gain good weight I am happy. Hopefully he will gain good weight quickly so we can kick the O2 to the curb! What a day that will be. I think I will throw a party.

Rhys with cousin Isaias this weekend.
Umm, how about cousin Isaias is 6 weeks old!

Today I am: 8 months and 3 weeks old
Adjusted I am: 4 months, 4 weeks and 1 day old

Friday, April 3, 2009

Nothing new today

Not a whole lot going on today. Rhys has been eating great and has gained several ounces since we bumped his oxygen up at the beginning of the week. Since his surgery we'd had him on a half liter since we didn't have a pulseox at home (until recently) to know what he was satting. Once we got the pusleox we started spot checking him every day and he has required more O2, so he is now at about 3/4 liter. Since we made that switch he's continued to eat well, but now he is putting on weight again. His O2 was obviously turned down too low so he was having to work too hard to keep his sats up and therefore burning the calories he needed for weight gain. That is my theory anyway!

I am beyond tired of the oxygen and so is Rhys. He is very creative in how to get the cannula off his face. He screams, yes screams, every time our hands move in the direction to put it back in. He hates it. I really wish we could have waited on the hernia repair for several more months to give him a chance to get permanently off the O2, but alas that did not happen. Now I am having to fight with an infant (that desperately wishes he was a toddler) who becomes more mobile and more capable each and every day. We have a pulmonologist appointment in about two weeks, but if he is still on his 3/4 liter I think I am going to reschedule as they will not do anything but tell me he isn't ready to come off. One of these days. Hopefully we can pack on the pounds quickly, increase his lung tissue and be done soon.

I had a "first" experience today... Rhys managed to throw up all over my hair. So gross. In an effort to save the chair from being ruined I turned him toward my chest when I saw he was making a funny face. Sure enough out it came, all down my front and over my shoulder, into my hair and all over his poor little face. I am so glad he rarely throws up because I hate the smell! Although, for some reason his throw up doesn't smell sour like I've smelled on some babies so I am thankful for that. So he got an early bath (where he has now learned to scoot and slosh the water), a new cannula and he was happy as a clam. I think it's great that babies can smile and laugh after throwing up because I know that usually isn't the case with adults!

Thursday, April 2, 2009


Hmm, how can I get that into my mouth?
Oh wait, what's that on tv?
I want to hear that dog bark again!
I am really cranky. I missed my noon time nap because
I was at speech therapy and I have been a grump all afternoon.

Also forgot to mention that when we were in the lobby waiting on PT Wednesday I had Rhys in my lap. He was looking around checking things out, I removed my hands from his torso and he sat up unassisted for about 3 minutes until he realized what he was doing. How exciting!

Today I am: 8 months, 2 weeks and 3 days old
Adjusted I am: 4 months, 3 weeks and 4 days old

Speech Therapy x2

Today's speech therapy didn't do much to alter my opinion that it is a waste of time at this point. Not much was different today than the first time except Rhys actually ate a little, whereas the with the first therapist he outright refused to have any part of it. He ate a little from the spoon and wouldn't you know he decided to gag for the first time ever today... scribble scribble into the notes. She tried to place him in a regular high chair and he was in an awkward position so I really think that had everything to do with it because he has never gagged on anything in his life. Then he turned his head to refuse the spoon and also pushed it away. After the spoon we tried bottle feeding, which he was super hungry and attacked it. The therapist got a perplexed look on her face when I told her out "recipe" for his milk and her eyes about bugged out of her head when I told her we put apples or bananas into his bottle. Don't I know that bananas are the number one food on the do not eat list for kids with reflux. Umm, nope, never heard that and neither have any of my friends who have kids with reflux. His pedi thinks it's fine, as does the GI doctor, you're the first person to bring it up.

I chatted with her about this and that trying to get her take on things. Overall she thinks Rhys did well, he isn't showing an aversion of the spoon he just needs practice. As far as the bottle, we tried a new nipple called a Pigeon brand y-cut nipple. I tried to add a link but couldn't find a good picture. This is a nipple sometimes used for kids with cleft palate. Total disaster. At this point I am of a mind that while he is an inefficient eater he does eat (even though he has his bad days) and we've been playing his game and have done whatever it takes to get his milk into him. One of these days he'll be able to tell me what the deal is so as long as he continues to eat, the doctor is happy and he is gaining weight let him have the thickened milk!

I think I am so frustrated with all the newbie therapists because I have to explain everything with each new person. They don't know his story so they are concerned he is on 3/4 liter oxygen and that he is on Prevacid and wants his milk thickened. Even though Rhys doesn't typically exhibit behavior that would indicate he has reflux the Prevacid always is a red flag and no one can get past it. He coughed a tiny cough, the same as he's been doing since he started drooling so much, about 20 minutes after he finished his bottle. Scribble, scribble into the notes... that is reflux. OMG, give me a break. Maybe it is or maybe it isn't. Overall I was okay with the therapist until she asked if Rhys had genetic testing done. His ears are too low she said. Are you for real? Did you really just say that? First, Rhys has my ears, and his ears look to be in the same spot on his head as every other person's ears I looked at on the way back to the car. I will admit that they are sort of pushed down because of the way the cannula hangs since we no longer tape it to his face. But do you honestly think that after 5.5 months in the NICU the doctors would have missed the fact that he had a genetic disorder?? He was premature for crying out loud, why do his eating quirks have to be related to anything else? Of all the doctors who saw him in the NICU, of all the tests they ran, scans they did, and of all the doctors he has seen since he was discharged not a one has mentioned a thing about it, but a speech therapist tells me his ears are too low. You've got to be kidding!

After all that the recommendation was to try the spoon once a day, so we can work up with full meals with the spoon. This was the second attempt to try this outside the home, and neither time was any good so I am thinking I will just have ECI come in for speech to work on his eating since they do it in the home. If that doesn't work I guess we will figure that out when we get there.