what we're working on

Rhys has a lot of great toys. Any toy that the PT used that Rhys was interested in, or that benefited his development, we bought for him. Among his favorites is his shape sorter. You know, the little musical box that you put shaped blocks through the appropriate cut-out. Rhys really enjoys the box and the blocks, just not together as the toy was intended to be played with. Rhys doesn't take objects out or try to put them in as he should. He really likes any container, no matter what it is, without being concerned with whatever is inside.

This isn't a concern per se, it's just something the OT noticed and suggested we work on. Our solution? We bought Rhys a bowl with a suction cup on the bottom of it to put his snacks in.

We tried it for the first time today and boy was he mad when he couldn't easily remove it from his tray. This afternoon he started grabbing his snacks out of it. That's exactly what we're wanting him to do! He is doing really well getting food into his mouth, and is also working on his pincher grip.


He likes to grab a handful of snacks at a time, and some end up falling down his front. You can see his little stack accumulating on his bib. He also likes to lick one, drop it and then go for a new one.

You can see how he sometimes holds his right arm. When he starts to hold his arm back we have to gently remind him it's there and usable! His use and coordination is getting much better in his right arm, but it's still a work in progress.

But, overall Rhys enjoys being in the high chair. Which is what we're going for. We want him to have positive experiences when eating to help further encourage him to try new things.

the eyes have it

This morning Rhys finally made it in for his checkup with his opthamologist. His original appointment was a few weeks ago but it conflicted with PT and we had to reschedule. Cody expected to be "ripped to shreds" by the doctor (she really is brilliant and has no problem telling you like it is) because Rhys hasn't been wearing his glasses lately, but that wasn't the case. Rhys did have ROP in the NICU, however his case was not severe enough to require corrective surgery and it resolved on its own.

Initially we brought Rhys in to get his eyes checked as a follow-up to the NICU exams, but also because he had a slightly lazy left eye. During the first post-NICU exam it was also discovered Rhys was farsighted. The glasses were prescribed in hopes of strengthening the lazy eye and correcting the farsightedness. For anyone who has tried to keep glasses on an infant, it is nearly impossible. We did the best we could, but it was a never-ending battle. At his last appointment we were told it looked as though Rhys's lazy eye has learned to focus properly and he might be able to lose the glasses soon. They gave us a pair of elbow guards to keep Rhys from grabbing his glasses, however that goes against our efforts with Rhys's PT.

Today Cody mentioned that to the doctor. She told him Rhys's eyes look great in the front and back (I guess that means everything is attached properly as it should be - remember ROP is where the retina detaches and causes blindness), his lazy eye is no more and his farsightedness has improved from a 2 to 1.5 (in terms of prescription strength). Way back in the beginning the doctor told us a lot of times if they diagnose farsightedness this early and it is treated correctly the condition can resolve to where glasses are no longer needed. In this case it has proven true for Rhys as its severity has decreased a bit in only a few months.

Ideally Rhys needs the glasses to continue the attempt at correcting his farsightedness, however the doctor agrees Rhys's PT is much more important right now and has therefore discontinued his glasses. And, she doesn't need to see him back for another two years. I am hoping that we can make enough progress with Rhys's PT in the next year to hopefully get him back to the doctor so we can address his eyes again before then. In terms of a vision impairment Rhys's isn't very great and it doesn't seem to cause him problems seeing things. But if there is a possibility of giving him better vision I'd like to try!

Because Rhys's eyes are so light in color it requires two rounds of drops to dilate his eyes. He absolutely hates this like nothing else I've seen. This time Rhys seemed to be a little disturbed when he got home. If you've never had your eyes dilated your vision is very blurry and the sensitivity to light is crazy painful if you're not careful. He is several months older and much more capable/aware than his last visit so I think he was bothered by not being able to see things. His eyes were still a little dilated this afternoon but he acted as though he was able to see okay and was watching tv and playing with toys as he normally does.

what's it like?

What it is it like to have a child like Rhys, who requires infinitely more attention and care than the average newborn/infant/toddler? Well, even though we don't know any different in our personal lives we do know it is a lot of work. A lot of work. Is Rhys considered special needs? In the strictest sense of the word, yes he is. And that is really hard for me to type. Certainly he isn't what immediately comes to mind when you think disability, but it's true nonetheless. It's very likely you don't think of the behind the scenes work a child with special needs requires. It's a completely different lifestyle for us as parents.

I found the following on a blog I regularly check. I liked it so much I decided to steal it! :) Not really steal it, but borrow it to share with all of you. If you're in our little preemie circle you might have already seen it, but if you haven't it's worth a read. Our family might make it to Italy one day or we might not. Regardless we are learning to appreciate Holland and the detour that took us there.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around... and you begin to notice that Holland has windmills. And Holland has tulips. Holland even has Rembrandts!

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things... about Holland.

mark your calendars

We're beginning our push for March of Dimes! We weren't organized enough last year to participate in the March for Babies, but this year we're starting a new annual tradition. I would love every one of our able-bodied friends and family to sign up to walk in support of Rhys and Bentley, Little Sister, and every other child born prematurely. You can join Team Rhys and Bentley by clicking on the donation link to the right of the blog.

Cody and I have seen first hand what this organization's research and support has done for our son and we want to contribute to it. If you donate to charity and haven't yet chosen one I would encourage you to think about March of Dimes.

Friends and family mark your calendars! The Houston walk is scheduled for:

April 25, 2010

We want a big turn out to support our kiddos!

third trimester

The day started off with a great OB checkup. I saw my OB's partner, who is fantastic, because my doctor was tied up. Cervix looks good, glucose blood work is perfect (no diabetes and no anemia) and my belly is measuring on schedule. My blood pressure was 112/62, Little Sister's heartbeat was 155 and I have gained no weight in two whole weeks. My increased contractions are normal and are not of concern right now. Dr. N told me she spoke with my perinatologist this morning about several patients, including me, and specifically told me not to fret about the peri's "too much fluid" (a.k.a. too many carbs and starches) assessment. She said not to worry until they (the doctors) worry, and they are not worried. My orders are to keep on doing what I'm doing. 28 weeks is great, but Little Sister needs to keep cooking eight more weeks. Wow, really? Only 8 weeks left?

While I was at the OB Cody took Rhys to get his Synagis shots. Apparently Little Man recognized the clinic and knows what he is there for. Cody told me the staff came in and out of the exam room a few times before Rhys actually received his shot. Every time the door opened Rhys started to scream. Poor kid. February is his last round of Synagis for the year, and I'm pretty certain he wont be getting them next year. But he is due for his 18 month shots so he's got more coming. This is what he thinks of that.

After the OB visit I decided to break the rules and stay on my feet long enough to grab sandwiches for lunch. I stopped at a shop in the front of our neighborhood to run in and out lickety split. I get back into my car and click, click, click. Are you kidding me?!? I called Cody, who was at the house, and he came down to check out my car. Dead as a door nail! Ugh. Cody knows cars, but even he was thrown by the noises my car was making and the way it was acting. So, we decided to take advantage of the free roadside assistance and have my car towed to the dealership to get checked out. You know, just in case. Luckily it was only the battery, and the best part is that it was all covered by warranty. Woohoo!

After all the morning drama I got to visit with my lovely friend. She is also pregnant, which is so much fun. Even though we are both on limited activity. Anyway, here we are.... me at 28 weeks, her at 17 weeks. She told me today she felt her belly was huge. Seriously, what belly?? Yes, I'm sporting some comfy pajama pants, that is what I live in unless I have to get out of the house. And in case you don't live in Houston and can't feel the weather, my hair is a great indicator of the 100% humidity we had today.

eighteen months, really??

Our sweet baby boy is 18 months old today. And, he's been home with us a bit more than a year. Browsing through the hundreds of pictures we've taken of him still leaves me in awe of everything Rhys has gone through and overcome since birth. So what is our little man up to these days?

Rhys is about 22 pounds and 30.5" long. That is on the chart for height and weight for his actual age! I recently had to order him 24 month tops and 18 month bottoms after a huge growth spurt. He has the four top and bottom front teeth completely in as well as several molars poking through. He loves to have his teeth brushed. Surprisingly, he opens his mouth when I start brushing his teeth. It must tickle because it cracks him up.

He's off formula and currently taking a mix of whole milk and pediasure. He still wont feed himself his bottle but he likes to play with it when he's done. He takes three bottles a day, or maybe four if he wakes up in the middle of the night. His gag reflex is much improved. We see it occasionally if something gets stuck but not so much in response to something he doesn't like, as used to happen quite frequently. His sure-thing standby food is still yogurt, though he seems to be liking cinnamon spice oatmeal now. Yogurt melts, crunchies, puffs and cookies are also favorites. He'll try just about anything you put on his tray, though he isn't crazy about grabbing 'wet' food such as mandarin oranges and apples. That is the only sign we've seen of a possible tactile sensitivity because he has no problem getting dirty or making messes.

He's doing fantastic with his right hand. Though he still has a closed fist at times, he reaches for things with his right hand and has gained a good level of coordination. He will occasionally even hand toys from his left to his right, and is starting to pick up food with his right hand even though he only feeds himself with his left. When he plays with toys he uses both hands at mid-line.

Rhys can sit for a few seconds at a time, but he will eventually teeter left or right. He is putting his arms in the correct position to prop himself but needs to learn to make his arms work in that function to keep himself steady. His torso and back muscles are gaining strength and we're seeing him lean forward to reach things and pull himself back upright (during assisted sitting). He's able to push himself up with straightened arms for a few seconds and is even starting to move his legs like he knows there is a piece he's missing. That isn't to say he's making the motion of crawling, because he still has a long ways to go, but he is making progress.

Rhys loves books! He enjoys turning the pages and has recently started opening and closing lids on his toys. He also likes to spin the moving parts on his toys. He slaps his hand on things and is beginning to bang toys on objects.

He's still babbling a lot though no words. He's been saying dadadada for awhile now, but he recently put a new spin on it. He chatters to himself a lot and we respond like we know what he's saying. He definitely understands "are you hungry" and "milk". We explain and label things constantly during the day and are trying to continue incorporating a few of the baby signs. One of these days he'll have a response for us!

Rhys is still a super happy baby, though he's developing a bit of an attitude as he matures. Yes, I realize this was going to happen! And to be honest I am not unhappy about it. I am hoping his little fits will make him angry enough to do something about it.

Happy 18 months, Rhys!

pictures

Dated, but here ya go. This is us at Thanksgiving. I have the little baby bump working (incidentally the shirt I'm wearing in this picture is now significantly tighter!) and notice the little blue bag attachment that has been a constant on my person for the last seven weeks.

Rhys from a few days ago. He really wasn't sad, I just caught him while he was trying to chew. Poor guy has been having fits with his molars coming in. Bloody gums and all.

Rhys is now using his whole hand to shove food into his mouth. He is even grabbing for things to remove them instead of just trying to push them out with his tongue.

His irritated gums have been waking him up a lot at night and ruining his sleep schedule. He was completely crabby all day today and fell asleep in Dad's lap before he could finish his bottle.

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

peri visit @ 27 weeks

Yesterday we had another visit with the perinatologist. Little Sister had her head buried in my side and wasn't willing to cooperate for a much of the ultrasound, but they did get all the measurements they needed. They are estimating her weight at about 2lb 4oz. Too bad she didn't get more of that 6-8 pounds I gained two weeks ago! All still looks well and she is growing properly so who cares if Mom has a few extra pounds to get rid of when this is all over? The peri did mention again that I needed more protein and less sugar/carbs. Surprise, surprise. This time she suggested eating protein in the mornings, instead of my typical cereal, and also having protein before I go to bed. Eh, I'll try it and see what happens even though it's really difficult to eat several small meals a day.

Overall I think my contractions may have increased a bit, but they are still random and not occurring every day. And they are still well below my four per hour threshold. They actually seem to happen more in late afternoon. I'm starting to get pretty uncomfortable at times. I have a hitch in my back, my belly feels huge, it is an effort for me to roll over or get out of bed, and my nose is in a constant stage of stuffed up. But I'll take it since I was fairly miserable from 14 weeks on last time. Cody bought me a humidifier for my bedside table in an effort to help my nose. It's been really cold here, we've been running the heater a lot, so Rhys and I are both needing the extra help.

Speaking of Rhys, I registered him for school today. He qualifies for vision services because of his brain bleed and they are provided through the school district. I intended to turn in the paper work at the beginning of the school year, but it just got shoved to the back burner with everything else going on. So now he will be receiving vision therapy in addition to the PT, ST and OT he already gets. I'm not exactly certain how much, if any, help he needs with his vision (even though he is far sighted) but in my book any therapy will be helpful so we're signing him up!

I don't particularly like the vision provider as much as the others, though she is perfectly nice and capable. I think I got a bad first impression during her evaluation of Rhys last summer. Rhys is very delayed in many ways and at the time she saw him he wasn't doing many things appropriate for even his adjusted age. Because he didn't pay much attention to her during the assessment she started referring to Rhys's "questionable vision". It really irked me that through a 30-minute eval she determined he couldn't see, despite the fact he's been followed by one of the top pediatric opthamologists since birth. Anyway, I'm keeping an open mind and just going with it. Nothing she does will effect how things are handled anywhere else in his life, and as I said any therapy is good for him!

thankful all is still well

Little Sister's heartbeat sounds good and my cervix is still "perfect". Woohoo! The closer I get to 28 weeks the more nervous I become. That isn't the ideal delivery, but it is a major improvement over having a micro-preemie. When I asked my OB today if these weekly cervix checks are harmful he responded "I hope not!" and laughed as though he made a great joke. Gee, thanks! I really do love my OB though, and I'm so thankful he is calm and confident without acting the know-it-all and dismissing my concerns. The weekly cervix checks are being used as a tool of sorts because of my sudden delivery last time. In the event I am not showing signs of active labor, as happened previously, the frequent cervix checks and cerclage should hopefully remove the element of urgency. I had my glucose test this morning as well. Not too bad I guess. I missed that experience last time, since I actually delivered the boys the day prior to my scheduled glucose test.

Two major accomplishments for Rhys this week. First, he has suddenly decided to chew and swallow food (mostly) without spitting it out. He has never cared for yogurt melts, but two days ago he ate a whole tray full. Put them in his mouth, chewed and swallowed. He's been playing around with food for months, but he never quite chews it enough to get it down. In addition to the yogurt melts our persistence with the oatmeal has paid off. For several days now Rhys has willingly eaten quite a bit of his (adult) oatmeal. He gets a little choked up on occasion from the grains, but this is still major improvement for him. I plan on giving him a few more days with the oatmeal and then I'm going to again try the mushed up mac and cheese and spaghetti that he didn't like a few weeks ago. Poor Rhys is also having fits with his teeth again. A lower left molar just popped through and he is chewing really hard on his right side. I am beyond ready for all these teeth to be in! Second big thing, the home heath peeps picked up the O2 concentrator and portable tanks yesterday so we no longer have O2 equipment in the house!

prayer request for Peyton

The preemie community is such a wonderful thing. I am forever amazed at the network our blog has opened to us. We've recently been told of a new micro-preemie, Peyton, who was born at the same hospital as our boys. He was born at 24 weeks gestation on December 28, while his parents were in town visiting family for Christmas.

If you have encouraging words, please stop by their blog and leave them a post.

Peyton's blog

http://www.thedadds.blogspot.com/

another year

Cody and I rang in 2010 playing Trivial Pursuit on Wii. We really are old, boring married people. I wish I could use the excuse that I'm pregnant and on strict orders to take it easy, but truth be told I can't say with any certainty we'd have done anything different if Little Sister weren't cooking.

This year has been a major adjustment for our family. Rhys came home after five and a half long months in the NICU. And, I quit working to stay home with him. My career plans never included being a stay-at-home mom, but given Rhys's situation I wasn't given much of a choice. No matter how it came to be I would do it over again without hesitation. I am truly blessed to be in a position that enables me to stay at home with him. Despite having days where I feel like my brain is turning to mush, I know without a doubt that things would not have gone this smoothly (relative term here given all circumstances) had I been working outside the home. Rhys has thrown us a few curves this year... with his expedited hernia surgery, which in turn extended his need for oxygen, and his overall development. But we've dealt with it.

We continue to miss our Bentley. A day does not go by that I do not look at his footprints taken at birth and the few pictures we have of him. I wonder how he's doing, even though I know he is more than taken care of, and imagine him looking down over us. After missing him for more than a year the only definite thing I can say is that the loss never gets easier, but somehow it becomes a small bit easier to manage. Easier only in the sense that I can look at his pictures, or the contents of his memory box without completely breaking down. No parent should know what it feels like to lose a child, there is no way to fill the gap that loss leaves in your life.

Second to Rhys coming home, the best part of this year was Little Sister. Cody and I have always wanted three or four kids so we were super excited to try for number three. We've had no assurances with this pregnancy, but so far we've been truly blessed with only very minor complications. We would still love one or two more, but I can not say whether my uterus will be open for business after Little Sister's arrival. Having a high risk pregnancy is very hard on your spouse and kid(s), not to mention the family and friends who so graciously offer their help.

In 2010 we are looking forward to good health, Rhys's continued development, and the addition of Little Sister (as close to mid-March as possible!).

I'll leave you with our excitement of the day.... Cody was on the couch watching football while I was typing this post. We'd just put Rhys on the floor to play for a few minutes after his bath. I saw that he was lying to one side playing and glanced back at my screen. I hear Cody ask "Did you put him like that?", so I looked up. Rhys had rolled over in the other direction, pushed up on his elbows on his tummy, and grabbed a toy. Great for Rhys! He's been able to roll completely over from back to tummy for a while, but not without a huge amount of effort. And his rolling left and right usually stops short of him being completely face down on his tummy - certainly not that quickly and smoothly. This is great progress for Rhys, whose weak back muscles have prevented him from doing this easily. I'm hoping this is the beginning of him taking initiative to move to reach whatever it is he wants.