belated birthday present

I wasn't expecting our pulmonologist visit to go quite the way it did today. We've seen that Rhys has been satting very well lately, but even still we were shocked when the doctor told us he felt Rhys was okay on room air. Say huh? You heard me correctly, Rhys is officially able to stay off the O2 provided he consistently keeps above 93%. Wow! Not only that, but the doctor (who we'd never seen before but really liked - he was the chief something something) feels okay not seeing us for an entire year. Assuming we have no other concerns pop up between now and then he said Rhys was coming along nicely and wanted to keep Rhys away from the hospital (germs) as much as possible. He mentioned the possibility of a sleep study, but didn't push it when we told him we'd certainly attempt it if necessary but didn't feel like Rhys would go for it. So, for now we will keep the O2 equipment, monitor Rhys closely to see if he needs help, and pray Rhys can stay free from any infections and sickness that might set him back. Oh, and enjoy our untethered child.

this and that

Thank you all for the birthday wishes. Rhys had a great party and loaded up on birthday presents. What a lucky little boy he is to be surrounded by so many that love him. One gift in particular was just the coolest thing. He got an oversized infant bath tub after one of our friends (who we affectionately refer to as "aunt" - all our friends are aunts and uncles to Rhys) saw the picture of him on the blog in his little bitty tub. Rhys still doesn't sit up on his own so it is much easier to bathe him in the the infant tub instead of the bath rub. This tub is enormous, I've never seen anything like it, and Rhys loves it! He has the best time splashing around in it. Splashing all the water out of it I should say.

He also loves this new toy. So many things to look at! He's quite the musician with all these noise-makers.

I'm looking forward to opening all his other new toys and throwing them into the mix. I am constantly excited to see him play with new toys and discover how they work. It makes me feel better about his delayed development.

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We went to the NICU yesterday morning bright and early to visit two of Rhys's primary nurses and bring the staff birthday cookies. They were super excited to see Rhys, and we love bringing him up there. While we were there I got to see fellow micro buddy Coy's new baby sister, Cydney. What a cutie pie! She is doing fantastic, but is needing a tiny bit of help in the NICU. Please pray for a super short NICU stay so she can get home a.s.a.p.

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Rhys is still sleeping really well. He takes great naps and is sleeping through the night. I wish the boy would eat as well as he sleeps! He's barely been eating lately and it's driving me crazy. He has started scooting downward towards his feet during the night (does that make sense?) and I am not at all sure how he accomplishes it. He'll also roll over onto his tummy in the crib, but no where else. So, he can do it, I guess we're still waiting on the organizational part of it to fall into place. My 18 pound sack of potatoes is hard on the back so I'm really wanting something to click soon!

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We are going to the pulmonologist tomorrow. I am curious to see what is said about Rhys and his O2. He is satting much better than he ever has, so I'm hoping we'll be able to start the process of getting him off the oxygen. I was somewhat annoyed with the doctor the last time we saw her and then when the nurse called several weeks ago regarding Rhys's apnea monitor download results from January. That's right, there was a 4 month delay in them contacting us with instruction. Because we all know nothing much of significance can happen in 4 months. Or say even 5 months, since that is how long it's been since Rhys has seen the pulmonologist. Hopefully this visit wont turn out that way because if it does we might end up searching for a replacement.


Today I am: 1 year and 3 days old
Adjusted I am: 8 months, 1 week and 4 days old

happy one year

My baby boy is one today. An entire year old. To say time has flown is an understatement. To say it seems like an eternity since the boys were born is also true. To say we miss Bentley more with each day that goes by is not an exaggeration.

Today is bittersweet for us given that we should be celebrating two birthdays. We cannot forget that we are without our second son. But we also cannot forget that exactly twelve months ago we were unsure how long either of our boys would live. We are beyond blessed and eternally grateful our firstborn is with us. Not only that, he is happy and thriving. We just wish his brother was here to share it with him.

So, what to say to the birthday boy? There is so much to say. What a year you've had.

You and your baby brother were oh so tiny the day you came into the world.

Rhys

Bentley

You were this tiny.

But what a fighter.

And the first time I held you, I will never forget. What a sweet day for a mom.

You've had more blood draws, needle sticks and IVs than most people do in a lifetime.

And so many tests performed I can't even remember them all.

But day by day you improved.

Until you were well enough for us to take you home.

And then back you went for your surgery.

Oh sweet boy, what a joy you are.

The Piano Man - happy birthday to me!

Happy birthday dear one! Mom and dad love you so very much.
Please join us in wishing our little man a very happy birthday, with many more to come!

Today I am: ONE YEAR OLD!
Adjusted I am: 8 months, 1 week and 1 day old.

back home

After five long weeks away, working on a continent that sits on the opposite side of the globe, my much loved and sincerely missed other half is finally home. Rhys has a couple pounds, an inch or so, and two teeth that he didn’t have when Cody left. Not to mention more hair, fewer clothes that fit, a larger diaper size, and better sleep schedule. Rhys greeted Cody with a great big smile, showing off his two bottom teeth, and Cody got right back into the mix as though he'd never been gone. We are so glad to have Dad back in the house!

PT and sleep update

After these first few nights in his crib I am finding that Rhys seems to sleep much better than he did in the pack 'n play. Hopefully that isn't a random occurrence. That isn't to say he doesn't still pull the cannula (and yes we use the little mittens but he gets those off, but thanks for suggesting it), but overall he sleeps much more peacefully and much longer. He more or less stays in the same position through the night, with minimal movement, so that to me says he is sleeping well and not tossing and turning. In the pack 'n play he always ended up in the same corner no matter which direction or position you put him in. He is sleeping through the night, with only the occasional exception. The last few days he's eaten very little, think ~12 ounces/day, and when he has woken up during the night I've fed him. The nice, long hours of uninterrupted sleep at night is making his nap times somewhat shorter during the day, but we are on a roundabout schedule for the first time since he came home. He wakes between 7am-9am, goes down for naps between 10am-11am and 2pm-3pm and is then in bed between 6pm-9pm depending on the events of the day. To those who think this doesn't sound like much of a schedule, it is relative to what we started with and I'm loving it!

We had PT again this afternoon and his therapist was pleased with some progress she saw in Rhys from his last session two weeks ago. His legs are much looser than they have been (making it easier for him to sit), he is grabbing for many more things than he has previously and his sitting "technique" is improving. In addition to his foot work with his toys, he is also increasingly showing more interest in pulling forward to sit while he is in his swing, bouncy, etc. He isn't pitching himself backward nearly as much when we practice sitting, though he is still lazy and slumps when he doesn't want to work. She keeps telling me his inability to organize things is very common in preemies, and I do believe her and accept that even though it doesn't make it any less frustrating. I am lugging around an 18 pound sack of flour that should, in a perfect world, be sitting, crawling and not rely 100% on me to do everything for him. She said she sees good markers of Rhys's development and he'll get it all when he's ready to get it. The boy knows how to get what he wants! I think that is one reason he frequently screams during PT... the therapist doesn't let him quit working and that is good for him. I do the same thing with him at home, but to a lesser extent since we don't have hour long sessions.

Recently I ordered a baby sign language activity set with flashcards and a book to teach me what I need to know. I am trying my best to identify things for Rhys - telling him about whatever behavior I do/do not like, what he is holding, what he is doing, etc. He is getting to the age that he should begin learning cause and effect and I'm hoping the baby sign language will be especially helpful for communication for us both. We'll have to wait and see what he thinks about it.

and he sleeps

In his own bed. After many nights of listening to my beautiful baby boy grunt, groan, cry, squirm, sigh, flip and trash about I'd finally had enough. I reminded myself he would pull the cannula whether he was with us or on his own and so decided to moved Rhys to his own room. Last night was the first night Rhys slept in his crib. Either he slept much better in his crib versus the pack 'n play, or I just didn't hear as much on the monitor. What bliss. He did wake up once with the cannula in his mouth, which required me to get entirely out of bed and walk to the other side of the house, instead of leaning over as I’d usually do. But that was a small price to pay for the other hours of uninterrupted sleep. So, here goes night two. I still am concerned about the cannula falling around his neck, but I am hoping he will begin to sleep more soundly in his crib instead of the somewhat wobbly (when an 18 pound baby moves about it’s going to move with him) pack ‘n play. Now if only I knew how to quit blinding myself when I wake from a dead sleep and intensely try to focus on what I see on the baby monitor. Happy 4th to you all!

Today I am: 11 months, 2 weeks and 4 days old.
Adjusted I am: 7 months, 3 weeks and 5 days old.

in case you were wondering

In the event there are questions pertaining to Rhys being such a grump, he now has a onesie that spells it out clearly for everyone to see. He's teething!

The parents of a good friend of ours recently took a trip to Colorado and thought of Rhys while they were away. How very thoughtful of them. And, oh how appropriate! So Mr. and Mrs. S - if you are reading, thank you so very much for thinking of our little man.

Since I can't fall back to sleep...

Why am I up at this hour you ask? I have this problem where I have difficulty going back to sleep after I have been woken up, whatever the reason. Okay, except when we first brought Rhys home. I was seriously sleep deprived and slept as soon as my head hit the pillow. Anywho tonight I got into bed at a decent time and had been asleep for a little more than an hour when I wake up to Rhys squirming. This isn't abnormal, but I could tell he wasn't happy. Sure enough, I hear water spitting (that is exactly what it sounds like) and wouldn't you know his cannula dumps water into his nose. He does not like when this happens. Rhys starts screaming, I take off his cannula, blow out the water, put it back on him and get him situated. Lucky for me little man fell right back to sleep. Unlucky for me, I didn't. Ugh.

So, what to do at 2 a.m. when you're wide awake? Why surf the web, of course! I found this really nifty growth chart calculator that allows you to plug in your information and it plots a chart for you, including adjusted and actual ages. How cool! I weighed Rhys tonight at a whopping 17lbs 11oz. I'm a bit surprised by his weight gain to tell the truth because he hasn't been eating that good. One of Cody's friends recently told me that all you have to do for babies in this family is give them milk and they grow to great heights. He was of course referring to the fact that Cody, his dad and grandpa are all well above 6 feet tall. If only it were that easy for Rhys! But, I digress. I just wanted to share Rhys's latest growth chart. I'm using his length from the end of May, along with tonight's weight. I really wish I would have found this tool sooner and been able to compare where Rhys has come from. Well, I know where he's come from... 5th percentile for both weight and height, but it still would have been interesting to have it all plotted together.

In case you're not familiar, the dot on the left is Rhys's adjusted age and the dot on the right is his actual age. He's getting really close to hitting the curve for his actual age, which is exciting for us since we've worked so hard to get him to eat! We're getting there ounce by ounce!

fancy footwork

sweet boy