Sunday, January 31, 2010

Our favorite faces!


We are very happy to announce that ALL the members of this household are starting to sleep better!!! Hopefully me writing that won't totally jinx it. 
(update: I will never mention "good" nights again! Nicholas was up at midnight, 2am and then I fed him at 3am. sigh. He's up for the day now at 6am and going strong)

The boys continue their food adventures, this week is featuring bananas and they are very happy with that. Alex apparently just needed the right motivation to figure out this whole spoon and eating thing. Carrots and squash were obviously not cutting it but he sure is doing a lot better now that we've turned to something sweeter. Imagine that. Yep, they may look like Daddy but still related to me :)

We have an incredibly busy week planned with appointments. I don't know how some of the big ones all tend to get lumped together but they do. Both boys see GI this week, and Alex also sees cardiology, the plastic surgeon, AND orthotics in addition to his regular twice weekly therapy and nursing visit. I'm tired just thinking about it all but we are hoping to make it a good week with all positive news!!!

Enjoy the pics!

Boys playing


uh oh.
Nicholas wondering what does this thing do?
It may look ominous but we're thinking Alex is encouraging him 
to help get it off. He hates the plastic in his nose.
We are praying that cardiology has some good news for us with this.


Nicholas found the oxygen tube again.....
this is his new favorite face. 
He has this new throaty giggle that comes with it
and it just cracks us up!



Ofcourse this is our favorite Nicholas face~!



And here's our other all time favorite face!



Alex sharing his personality instead of hiding it from the camera.
He can be such a ham these days, and we LOVE it!!!





Boys having a ball!

Friday, January 22, 2010

Clinic


Update on clinic day: It was as good as it was loooonnnnngggg. (Thank you to Nana and Grandpa Shaw for watching Nicholas so he could stay at home in his normal routine!!!!)

For anyone who doesn't know, Clinic is essentially an appt. where multiple different medical specialists are there to meet with patients on the same day. Its a benefit to patients obviously because it minimizes the sheer number of appointments but more importantly the medical specialists can also discuss each patient with each other and do some problem solving, discuss resources, etc.

Not everyone with SB goes to "clinic" per-say, there are pros and cons as with everything but we thought we'd give it a try and see what we thought. We started with Alex's kidney ultrasound which thankfully looks good. We were anxious about this since he has had kidney reflux before. He will have another scan in three months to keep an eye on things. We know that many children with SB have to be catheterized to help empty their bladder and protect their kidneys if their bodies are not doing the job adequately. In other words if the bladder gets too full and doesn't empty regularly, it can back wash (reflux) into the kidneys which is not good (can cause repeat infections, scar tissue and ultimately permenant kidney damage).

Many parents who have to learn how to cath have said cathing just becomes routine and yet the thought of this has always given me angst. I think partly because every time we have been in the hospital and Alex needed cathing, none of the nurses could do it and always needed one of the urologists to come (this is because he has hypospadius and is actually fused down there--this is the surgery he will need when he's bigger to correct). I'm thinking if a nurse can't do it, how the heck would I if/when the time comes? Anyway always too far ahead of myself.

The ultrasound did reveal that Alex's kidneys are fused together. I was alarmed by this but the urologist assures us this can happen during development sometimes and has no bearing on his current kidney function. He just has one very large kidney instead of two. I've since done a little research and learned this anomaly can be associated with increased incidence of kidney reflux , argh but again thats why he is being followed so closely.

The urologist then wanted to do another exam (cystogram) where he inserted a catheter to fill up Alex's bladder and watch on the monitor how it contracts and empties. There was a lot of information given to us yesterday so I'm not sure I processed it all but I think it can show how well his bladder empties completely on its own or if there is constant residual and/or possible reflux. He said the test is not perfect but he was happy with what he saw. Big sigh of relief!!!! He doesn't think Alex needs anything added or different to his routine (right now he is just on an antibiotic daily to prevent urinary tract infections due to his anatomy and history of reflux).

He did say that he doesn't think he can have the surgical correction of this until after he's a year old. He wants him to be much bigger overall in order to have the most potential for success. We are fine with this!

We also met with physical therapy who played and evaluated Alex. He gave his best and flirted shamelessly!!! We are asked by family and friends if Alex moves his legs. The simple answer is yes. The more complicated one is he has a little bit of movement, more with his left than his right and not terribly frequently with either. He seems to have some hip movement that helps him roll (you can actually see how hard he works for this and he makes us so proud at this). He can lift his left leg up and tense it and we've noticed a little bit of movement recently with his feet, though not consistently. He doesn't seem to have ability to bend his knees at all. Its hard to know as parents or even the professionals what this will all mean in the real world for Alex as he gets older but we are happy with any and all movement. We remain confident that no matter what, he'll be able to be independent even if that means he needs some sort of devices to do so. His fighting attitude even at this early age tells us that!!!!!!

Physical therapy was very happy with where Alex is right now, and was encouraging about the small movement he has started to make once in awhile with his feet and ankles. They think he is demonstrating muscle abilities in his quads and glutes which lead everyone to believe that with braces and lots of therapy, he might be able to walk in the house or maybe short distances. They explained its hard to tell anything for sure this early but they were reassuring that what our regular therapist is doing and the exercises we do at home daily were right on task. We are told with therapy, children can continue to get more movement, its unclear how much more or how long but we are thrilled with how well he's doing so it doesn't get much better than that!

We made sure we scheduled an appt with Ortho to discuss hip issues, leg length discrepancy since they were unable to be at this appt.

More than three hours later, Alex was simply exhausted. To my disappointment he is not a baby who is able to sleep cuddled up on me (unless he's not feeling well). He just prefers sleeping flat on his back and can't seem to get comfortable any other way. He did not sleep our whole time there and it was starting to show by this time. He rarely even sleeps in the car seat in the car although this is getting a little bit more common probably due to essential need with all of our appts and him missing naps. Anyway, on our way out someone realized that we had missed meeting with occupational therapy (we had no idea, we assumed everyone who had marched in and out of the room all afternoon was everyone, there were multiple medical students in addition to the therapists, doctors, etc) so after all that time we still did not meet with everyone we were supposed to. We'll have to make a call and see if we can talk or meet with him/her separately.

All in all, our first clinic appt was a success and we were thankful for such good news and that we have so many people watching out for him!!! Oh....and Alex did sleep in the car on the way home!!!

Here's a couple of our recent favorite photos:


We LOVE this stage. The boys are really starting to notice and pay attention to each other now. We are noticing that they are beginning to look for their brother in their crib or when playing, it is awesome!


Here's one where they are just sizing each other up.

Nicholas wondering where is his fancy hat?

I love this one. Nicholas says "but I want the dog rattle, and Alex says sweetly "but if you really love me, you'll let me have it"....

I'll leave it up to you to decide how this one ended :)


Daddy


Have I mentioned recently how lucky I am?? I often talk about how blessed I've been with two of the boys in my life, but too rarely about the amazing person who is been by my side through it all: my husband! We've been together.....gulp....over 16 years and married for 11. Wow, I certainly don't feel that old but I guess the numbers don't lie, ha,ha.

We've been through a lot in this amount of time together and Mark has been an incredible support system. Through the hard times he's given me "pep" talks, held my hand, (sometimes he's had to literally drag me forward when I felt like giving up), and he always finds a way to make me laugh.

He'll hate that I'm writing about him but we plan to print this blog out for the boys when they are older and it would be seriously remiss if I didn't share just a little bit about their dad: He couldn't wait to be a dad! It was through his unending support that we finally got our miracles.

From the very beginning when they lived in the NICU for over three months, he was there every single day to see them, hold them, love them, advocate for them. I think maybe one day he couldn't come because he was afraid he was getting sick and he didn't dare bring anything near them and he was absolutely miserable with missing them.

When we brought the boys home, he doted on them like all new parents do. But he was all about getting his hands dirty too. He has never shied away from any of the things that the boys required, from the more simple things like changing diapers, baths, to giving medications in syringes, monitoring oxygen, even ugh, giving enemas because his babies needed them sometimes.

He always shared the responsibility of getting up in the middle of the night to do feedings and he has honestly never complained. After 5 1/2 months of having them home, we STILL share responsibility of middle of the night needs. He certainly has earned the right to say that he has an early meeting to get to, or has an extra long day ahead, etc but he has just never done that. He actually even argues with me who has had the harder day and he always suggests me, who does that?

I always knew what a great Dad he would be but its incredibly special to see it in action. He can't get enough of his boys. He always calls and checks in with us during the day to ask how the boys are doing. After working a long day, he seems to have renewed energy when he walks in the door and sees them. He spends the rest of the evening playing, feeding, changing, and snuggling and offering me some time to rest, shower, whatever. I almost always have to remind him when its time to put them down to bed because he's never ready. I know the boys feel this. The way they look at him back, and I swear sometimes they save their best smiles until Daddy gets home. I will always remind them how lucky they are to have a Daddy like him!!

Happy Birthday love!!!

My three handsome fellas, a girl just doesn't get luckier than this!!!!


Wednesday, January 20, 2010

Laughter

Things are slowwwwwwly improving in the sleep department. One or both boys are still waking up a couple times at night but mostly to talk to themselves or chew on their hands, not recently requiring one of us to get up. Ofcourse that doesn't stop me from being awake to watch and listen to them on the monitor just to make sure they don't need me (I'm obviously a glutton for middle of the night punishment but one baby step at a time, right?).

Nicholas has been having a flare up of his reflux in the last week so I've been on the phone to his GI office literally daily trying to work through what might work best for him. We are now trying another medication for him and have added back one that we've used in the past, just at a higher dose. We are hoping that does the trick. Bottle time has not been the most pleasant time yet again but this is a rollercoaster we've been on plenty of times before and we always get through it. The good news is both of their weights are still going up, up, up! Nicholas's weight as of last week was 13 pounds, three ounces. He had just gone down for a nap when the visiting nurse came yesterday and there was no way I was about to wake him up so we'll get another weight next week and give him some time to pack on the ounces! Alex has been doing that and then some. He is up to 14 pounds, 1 ounces and he's got those beautiful baby rolls to prove it!!!!

Our food adventures have turned to veggies and both boys seem to really like sweet potatoes! Alex is still trying to figure out the whole spoon thing, he wants to grab it out of our hands and play with it but really can't figure out why we are trying to put it in his mouth. Once we manage to get it in there though, he seems pleasantly surprised at the taste. We just practice every day. Nicholas has already become the expert at these things and generally has his mouth open before we scoop up the next bite. He much prefers the food versus that stuff in the bottle!

We have our first spina bifida clinic appt for Alex tomorrow and are anxious to see what its all about. We know its scheduled to a bit of a long day and that we will be seeing occupational and physical therapists, as well as his urologist. (We saw a neuro-developmental specialist apart from this visit last week and that went well, he just had a couple of recommendations.) We will also be taking Alex for another renal ultrasound to see how his kidneys are doing all before this appt. and I guess I"m most nervous about those results since he has had issues related to this before but hopefully all will go well.



We are trying to upload a video of the boys so check back soon, its worth a smile...





video

Thursday, January 14, 2010

The helmet

Say hello to your fans Alex

Alex wanted to show you his souped up helmet, he thought it needed a little "something, something" (mommy and daddy abliged)!

Alex asking Nana what she thinks about it....



Yay, everyone likes it.

More to come....

Saturday, January 9, 2010

Cereal

Today was a big day in the Rissberger house. The boys had their first taste of cereal!!! They both did great with it!!!! I have to say that it didn't look like anything I would like to eat but they didn't seem to mind it. Its good to know that the boys are learning early that they can't be too picky about the meals around here, ha,ha!

Alex was not sure what the big deal was.

just another day for the paparazzi he's thinking


okay, I'll play along...yum?
but really remained unimpressed.


Nicholas started out with a little more enthusiasm


Here dad, I got this.

that was okay, but what about dessert?

no....really....no cookies, cake, nothing?
(he may look like daddy but I think he has mommy's sweet tooth)!

Friday, January 8, 2010

Eight months

The boys are doing very well, keeping mommy and daddy on their toes, morning and night, haha. We lost some ground a few weeks ago with that tummy bug regarding longer sleep stretches and we've not quite made it back. We were getting up twice a night again the last couple weeks, but it was okay because we knew they needed those extra calories. Now we are at least down to once a night again but boy that 2am feeding (times two) never gets easier.

We are now contemplating when to move the boys into separate cribs. They would still share a room but lately one is always waking up the other during naps AND nighttime and I'm wondering if at least separating them a little bit might help the one who wants to sleep a little longer do that....

We are also thinking that they might start sleeping better if they eat a little more. We ARE very grateful at how well they are actually drinking these days, because usually with one of them there is always a battle with the bottle but they seem hungrier than ever recently. The pediatrician gave us the go ahead to start trying some cereal so I'm so excited that we will be starting this weekend. I know it will likely be a very messy experiment instead of a "meal time" per say but I'm looking forward to helping them practice. Its just another big step in their little journey and one that we are already celebrating.

We are also very happy that they've played catchup with their weight loss and then some. As of a few days ago Nicholas is 12 pounds, eight ounces and Alex 13 pounds, three ounces!!!!

In other news the boys are just now starting to pay attention to eachother. We place them next to each other and they just stare and check each other out, it is an awesome thing to watch. I'm not sure they know what to make of each other yet but they are now very aware of the other. They are also putting just about everything in their mouths these days, and if they find each others hands, well that counts too!!

Lastly, Alex has really done exceptionally well adjusting to his helmet. He barely seems to notice it now, he is such a trooper. We go every week to have it checked and adjusted and so far so good. He's wearing it 23 hours a day and we take it off once or twice a day for no more than an hour to wash his head, the helmet, check the shunt and love on his sweet little head without the plastic being in the way. Absolutely no concerns with the shunt so far which is such a huge relief!!!

We can't believe its already the new year. Not to wish time away but we are looking forward to when the cold/flu season is over and we can stop feeling a little bit like prisoners in our home. We continue to do everything we can to keep the boys protected this season, even when that means having to stay away from family and friends who have runny noses and the like. We have kept the boys away from stores, church, and even missed seeing our little nieces and nephews who are in preschool and school for now because they are at so much higher risk of bringing something around. Its not easy, especially when we want to share these amazing little boys with the world.

I'm sure that some think that we are being too overprotective. All I have left to say on that matter is that we are going by the advice of their specialists in regards to their premature lungs and BPD (Bronchopulmonary dysplasia).. We'll keep doing what is in our power to help them in staying healthy and avoiding re-hospitalization this year. They will have plenty of time in the future to build up their immunity when their bodies are stronger to handle it. For anyone who still doesn't "get it", I'm actually happy for you, as you've obviously never had to learn about these complications related to having a micro-preemie. I honestly don't mean that sarcastically, I certainly would have never understood any of this prior to being thrown into this new world.


Alex LOVES sitting up and 'reading' his books!
Don't you just want to pinch those cheeks?
Nicholas already has the daddy smirk down pat!
and his smiles are always priceless!