The Swenhaugen Family

Ella's First Month!

2011-10-22T15:20:00.001-07:00

The first thing I always say when people ask about Ella is how amazingly sweet, happy and content she is! The transition in adding a 6th little person to our household has been suprisingly easy - and I'm not sure if it's Ella's peaceful temperament, the "expertise" Perry and I have as 4th time parents, or the understanding and patience that LP, Jaden and Riley have given to Ella and us. It's probably a combination of all three. Well, then of course there's the comparison to Riley's first month of life just 2 1/2 years ago - which makes virtually everything in life seem like a cake walk!

Ella was released to come home with us about 22 hours after she entered the world. Perry and I couldn't get outta that hospital fast enough! She gave us (and by us, I mean Stacey) a rough first night...not wanting to sleep, but refusing to eat. We thought we were in for some long nights ahead. But much to our suprise, every night since has been smooth sailing! Ella's been sleeping through the night, except to wake up and eat, just once, around 4-5am. She's been sleeping a ton during the day, and even when she is awake...she barely makes a peep :)

Jaden gave Ella her first bottle at 2 weeks old. She took it like a champ! Jaden did a great job prepping her for her first day away from Mommy at 3 weeks (Ella preferred to stay home with Grandma and Grandpa rather than brave the Puyallup Fair!) For the most part, Ella eats about 2-2.5 ounces per feeding...which doesn't seem to happen on any sort of regular schedule just yet. She can typically go 3-4 hours between feedings, except for in the late evening, when she likes to eat every 10 minutes for a solid 2 hours straight!! It's comfort eating, right before bed time...

Ella loves her bath, but HATES getting her diaper changed. She doesn't tolerate a poopy diaper, and she's still undecided on the binki. We've tried several different types/sizes...but for the most part she just cant' seem to keep them in her mouth on her own. I think we've finally found the right one though...fingers crossed :)

I started back to work when Ella was 3 weeks old! Luckily, my boss has been generous enough to let me work from home a few days per week, and bring Ella in with me on other days. She's been perfect at the office...either sleeping in her stroller or laying on her boppy accross my lap, watching me type away on my computer (kind of like she's doing right now!) And thanks to the boppy - I've even figured out how to nurse Ella, hands free! So she can eat and I can work all at the same time :)

As the weeks have progressed, Ella's started to be more alert during the day...I'm sure having a 4 year old and a 2 year old for siblings have nothing to do with that!! Yes, Jaden and Riley don't quite understand the concept of "quiet" at times, but they absolutely LOVE Ella and have been a great help. Jaden loves to hold Ella and asks several times per day. Now that Ella's awake more, Riley is infatuated with her. All throughout the day, you will hear Riley exclaim with pure excitement - "Mommy, Ella's eyes open!!!". Riley is also very cautious and patient when it comes to Ella, and except for getting a little too bounce happy with Ella in the bouncy chair, she generally asks permission before engaging with her. "Can I kiss her, can I hug her, can I hold her, can I give her binki?" It's very, very sweet :)

Little Perry, of course, has been great with Ella, just as he was with Jaden and Riley at that age. He definately prefers newborns to those crazy toddlers :)

Finally, Ella and I do want to make a shout out to one other fabulous little man...Ella's cousin Pio Daniel Synder was born just 12 days after Ella! He's the first baby for my sister, Nichole, and her husband, Marc. Its been a lot of fun for our family having two babies around that are so close in age. Its going to be so much fun watching them grow up together...

For pictures documenting every single second of Ella's life, check out the photo links on the right side of your screen. I'll try to update monthly with pictures and details about Ella's growth and development. Until next time...

Riley's 15 Month Update!

2011-01-12T13:42:00.001-08:00

Big news this month! The little plastic thingy-ma-bob taking up residence on my tummy has disappeared. That’s right, as my Auntie Cole would say, I’ve gone wireless. And if you still don’t get it, I had my feeding tube removed! The big day was August 4^th (Happy Birthday, Grandma!). There was a lot of pressure leading up to this day. Though Dr. Pisharody said we’d have it removed six (6) months after I stopped using it, I still had to show that I was capable of packing on the pounds without it. As mommy stood by biting her nails, I laid down on the scale with confidence. I knew I had it, mostly because I had already graduated to size 3 diapers, so it just made sense. When the scales finally tipped in at 18lbs, 6oz., it was a done deal!

The tube came out much easier than it went it – no surgery included. It was a simple in-clinic procedure that took just a few seconds. The most intriguing part really was the cool bandage I got to rock instead :) As for my weight, Dr. Pisharody said I was still pretty low compared to other kids my age, but finally above the curve! In fact, when compared to other kids with my height, my weight was actually pretty average (50^th percentile).

I have to say my new found freedom from “the tube” has given me a lot more confidence and a lot more fire! I like to make my own decisions and let you know when you’re messing with the wrong chic. My grip is the strongest around, as you might find out if you try to take something away from me. I always win. I’ll take the toy/bottle/too-small-object-that-I’m-not-supposed-to-have with all of my might, and then try to hide it behind me where you can’t see it. Then I’ll let out a loud scream to distract you. If you finally prevail it taking _____ away, I’ll proceed to lose all of my strength and throw myself backwards until I hit my head on something. Then I’ll cry as if I’ve just been tortured, usually until you give me back what I so desperately need to have. It’s a whole process that I’ve perfected over time, but it usually gets the job done.

When I’m not engaging in theatrics, I can usually be found climbing up and down stairs, emptying the toilet paper roll, and walking from place to place with the help of the wall or nearest piece of furniture. I’ve finally figured out that cruising gets me from A to B much quicker than the boot-scoot does. I LOOOOOOOVE to be outside. In fact, not letting me out when I see my brothers out there will often result in an episode similar to that which I mentioned above. My favorite thing to do is bounce on the trampoline with mommy. With Jaden, not so much. He doesn’t quite get that I don’t want to be bounced around on my own like popcorn. Boys. Another fun outside activity is eating bark, but don’t tell mommy about that, please.

My babble has really started to explode in this past month! No new “words” to report, but trust me, I’m talking all of the time. Lots of mixed syllables, in addition to my most favorite term (combined with a point), “uiiiiss” – which Daddy says must mean either “this” or “please”. Though I’m not quite able to articulate all of my words yet, I definitely understand what people are saying to me. For instance, I know the meaning of the word “no”, even though I sometimes choose to pretend I don’t. I know what “take it out of your mouth” or “no eat” means, especially when the object in question is one of my hair bands or a small lego that my brothers have left out on the floor.

I also know what “lay down” means – a term I commonly hear when I’m screaming from my crib at bed time. When Mommy says “lay down please”, you’ll quickly see me lose all of my leg muscle and fall directly to my bum, before throwing my head either backwards or forwards onto the mattress. The loud cries then continue indefinitely until Mommy places her hand on my back, and quickly start up again once the hand is removed. But I don’t think I’m high maintenance at all. Really.

I’m eating lots of new foods these days and getting away from baby food. I love to eat any kind of bread, and really enjoy taking bites out of a whole apple (or red bell pepper) all by myself. Mommy and Daddy have basically done away with (almost) all of the bottles, and I’ve grown accustomed to sippy cups over the past month. The transition wasn’t too difficult, except for those daily 4am wake up calls requiring a warm bottle. It’s all strategy, really. How else am I going to get a bottle at this point??

Until next time….

Jaden's 3 Year Update!

2010-05-14T21:39:00.000-07:00

So, bring on the scolding. It's really been about 7.5 months since my last update :( Time really flies when you have a new baby sister and two parents working full-time, I guess!

Believe it or not, I'm free! (that's three (3), to those of you who don't know not I'm a pro at pronouncing my th-sound yet!) I had my 3rd birthday on April 19th! Since my birthday fell on a Monday this year, we waited until the following weekend to have my birthday party at the Jungle Gym. All of my favorite friends and cousins were there to play too! We had a small toddler-proofed gymnastics facility all to ourselves, complete with a trampoline, zipline, trapeze bars and more!

We had such a good time, but I'm pretty sure my daddy had the most fun. Unfortunately, he over-jumped his flip on trampoline and found himself with an injured toe!!

At my free (3) year check up, Dr. Anderson was pleased with my progress, as usual :) Not suprisingly, I'm still in the 95th percentile for both height and weight. I'm 3' 4.25", and 40.1 lbs!!

Looking back over the past several months, a lot has changed. For starters, Riley's been home with us consistently since September. She's feeling great and she keeps growing bigger and bigger. I really like to make her laugh. Sometimes we take a bath together and I teach her how to splash! I've also been teaching her how to hold her own bottle, but she really likes it better if I feed her myself. I'm pretty good at it, until I get bored about two minutes later!

Sometimes I'm a little too rough with Riley, though. I do a lot of little mischevious things without thinking - like sqeezing her hard, or hitting her with a toy, or pouring water over her head in the bath after mommy has instructed me not to about 18 times. I tend to have a problem focussing, and don't listen to what you say unless you've got my complete and undivided attention. The good news is that I'm definately not as defiant and "sassy" as I was at 2 1/2, but instead I just choose to ignore directions completely. Yeah, we're working on that...

Before Mommy went to work in February, I had a fun time being home with her and Riley. We had a nice little morning routine all worked out. I would wake up and pretty much take care of myself while Riley and mommy were still sleeping. First, I'd go to the bathroom, then take off my pull-up. I'd go into Riley's room to throw my diaper in the diaper genie (sometimes "it makes me happy" to throw it away in the bathroom, but it makes Mommy happy if i put it in the diaper genie), and retrieve a baby wipe to clean myslef off. Then I'd go put some underwear on put back on my pajama bottoms. When all that was done, I'd wake up Mommy!

Much to Mommy's dismay, I started becoming really attached to the TV just as soon as I hit the 2 1/2 mark. It started with 10-15 minutes of Baby Boost and other educational shows. Then I branched out to Dora the Explorer and Mickey Mouse Clubhouse. Those are still my favorites, although I also enjoy a little Fresh Beat Band from time to time. Grandma got me hooked on Disney Movies. Snow White, to be specific. I wouldn't say that I have a crush on Snow White, but I kind of do. I like to call her sleepy because she sleeps at the end of the movie. She and her 7 "hi-ho guys" are hilarious! Again, I wouldn't say that I have a crush on Snow White, but for my Christmas Ornament this year, I made sure to pick out Snow White despite mommy's efforts to encourage me to choose Mickey Mouse or another more masculine ornament ;)

I also enjoy Cars, Monsters Inc., and the occaisional Cat in the Hat. I don't really sit through them all like I do Snow White, though. Hmmm. Daddy took me to my first movie in the theater recently - just him and I. We saw Alvin & the Chimpmunks - the Squeakwal! I had a really good time and Daddy said I did well.

Aside from TV/movies, I've been really into board games since before last Christmas. I've probably gone through every game in Perry's closet - including connect 4, operation, bed bugs, hungry hungry hippo, etc. For Christmas, Mommy and Daddy got me Old McDonald and Kerplunk (my fav!). I also like to do art projects - stamps, stickers, and anything with glue. I got a box of art supplies and paints, so I try to do projects any chance I get!

I'm still going to the same pre-school at the Community Center. I love my teacher, Miss Geneva! After mommy started going to work, I got to go to school every Friday with my Grandpa! Grandpa is a really good teacher and he's been really helping me to stay focussed at school. For the past couple of weeks, since I turned free (3), I've been going to see Miss Geneva on Tuesdays in the big-kid class!! My new class has 3 and 4 year olds--and guess what? No parents!! Grandma and I were a little nervous about dropping me off at school all by myself for 2.5 hours, but I did great. Miss Geneva said I knew the routine and did a really good job on my own!! Now instead of just learning letters, I'm learning how to spell words like C-A-T, H-A-T, and C-U-P. I'm also learning about really cool things too - like how a caterpillar turns into a butterfly! I'm learning to cut with scissors, but coloring is really not my cup of tea. I like to give any picture a few scribbles and then be done with it and move onto the next thing :)

I started soccer in January at Starfire Sports in Tukwila! I've got pretty good ball control for my age and really like to dribble. Kicking hard - yeah, not so much. Running fast - yeah, not so much. But I love to run around for long periods of time so at least I've got endurance!! Just recently, I moved up to the big-kids soccer class - again, without parents!! I've never really needed their assistance on the soccer field much anyway, and my coach actually recommended that I move up about a month before my birthday. Sometimes my parents still like to interject though - like when I'm not following instructions or when I pull my shorts up enough to expose my little bum cheeks!! What?

I have my own scooter and i just got a new bike with training wheels for my birthday! I love it, but we don't have a lot of flat surfaces at my house to ride on, so I usually take it to Grandma and Grandpa's house to ride. They have a fun park by their house with a crazy-8 path that I can ride around and around and around on!

But I have to say my favorite, FAVORITE activity of all time--well, besides jumping on my trampoline--is working out in the yard with my Grandpa. I love to work, and I work really hard. I don't know where Grandpa would be on his yard without me! I'm lucky because Grandpa is really patient with me and shows me how to use all of the tools - he bought me my own shovel, rake and hoe. I even have my own special Diego work gloves! Grandma bought me a watering can so I can help her water the plants too!

Since Mommy went back to work, Riley and I have spent most of our time with Grandma. When the weather is nice, she loves to take us outside. Riley plays in her swing while I ride my bike or help Grandma with the plants. Sometimes she takes us for a ride in my wagon, or we color with sidewalk chalk. When it's nap time, I usually go to sleep in my own toddler bed, just for me! I don't even need anyone to lay down with me like I do at night time. I'm also working on not pee-ing in my pullup when I sleep. I'm pretty good when it comes to naptime, but not so good overnight.

My language skills are still pretty impecable - although I still say a few crazy things now and then:

I've been known to refer to my throat as "my throw up"

My plaid pajama pants are, in my opinion, entitled "square pants"

And short sleeved shirts are simply "short shirts". Short shirts and square pants have been my favorite outfit for a while, although now I'm starting to favor shorts. I like to change into my square pants or shorts just as soon as I get home everyday. And if Mommy tries to put me in a long sleeved shirt, chaos ensues. In protest, I push my sleeves up just as soon as she gets it on me! Luckily the weather is getting nicer and I'm starting to win the battle.

I'm known to call a choo-choo train "chugga train" instead.

And did I mention that my birthday party was at the "Gungle Gym"?

I like to dine at Red Robin, or "the house with the red roof"

And just tonight I refered to my knee as "the elbow on my leg"!

I hope my Mommy doesn't try to embarrass me with any of this when I get older...

In general, I'm a VERY active guy. And a pretty typical boy (except for the Snow White). I love to wrestle, build and destroy forts, jump on the trampoline (and my bed), and I try all sorts of new tricks all of the time. Just today I showed Mommy how to hop while holding up my knee. Yeah, I'm pretty skilled. Along with all of the energy and adventure comes a little aggressivity. I still warn people that I'm up to no good by biting my lower lip in contemplation of or in the midst of a mischevious act. But, I guess it's what makes me Jaden.

I really like to be in control, just about all the time. I ask a lot of questions so I know what's coming up next. I ask Mommy, and then I ask Daddy just to doublecheck her answer, and vice versa. "Are we going to do this?" "And then after that are we going to do this?" I really like to plan ahead. I guess that's another not so masculine trait. Haha!

Check out the pictures on the right side of the screen to see what I've been up to all of these months! Bye!!

Riley's 9 Month Update!

2010-03-15T15:13:00.001-07:00

My 9th month of life has been a little rough for me because cold and flu season decided to interfere with my otherwise happy state. Unfortunately, my week immune system couldn’t handle all of those yucky germs floating around, so I’ve been plagued with nasty coughs, runny noses, more-elevated-than-normal urges to vomit, fevers, and my trusty sidekick, the ear infection. Lucky for me, no more hospital trips since the last short stint in January, but I have had many trips to the doctor, various medications and some bonding time with a nebulizer. It seems that as soon as I feel healthy for about a week, some irritating bug comes to annoy me again. Hmmm….

But, there is good news, I assure you! On February 17th, Mommy started going to this crazy place called work. Although I missed Mommy’s presence everyday (and still tend to cry every time I see her if she’s not holding me), I this seemed to motivate me enough to have a breakthrough with my feeding! Daddy of course claims that his week home with me during Mommy’s first week back to work is what did the trick…but either way, I’ve gone from 3 or 4 ounce bottles to 6 or 7 ounce bottles at every feeding! I’m FINALLY exceeding my daily intake goals set by my GI doctor, and everybody is really, really excited! Soon, that G-Tube will be a thing of the past!

Another benefit to Mommy’s new schedule is that I get to spend lots of time with my Grandma during the day! Grandma plays with me all the time and she’s got all sorts of fun toys to keep me entertained. Luckily, my speech and physical therapists don’t mind meeting up with me at Grandma’s house, so my therapy sessions have continued without a hitch!

I’m still having a little trouble with upper-body strength, which makes crawling problematic. I’m working on it though and don’t seem to mind tummy time quite as much anymore. I’m also working on holding my own bottle, but I don’t really have enough of an attention span for that yet, unless Mommy puts something really cool (like Mardi Gras beads) on my bottle for me to play with. My absolute claim to fame in this last month has been my standing. If Mommy puts me on a little seat that is slightly elevated from the ground, and positions me right in front of our ottoman, like a reflex, I shoot up immediately to standing position and hold myself up next to the ottoman. I love it! Everyone says I’ll probably skip the crawling and go straight to walking. Hmmm…sounds good to me!

Solid foods. I’m doing much better on those, too! I’ve started taking on more and more dried fruit bites, real banana pieces, and crackers, Mmmmm. I still have a highly sensitive gag reflex though, so feeding time is always fun. My baby bjorn soft bib is an absolute necessity.

I’ve proved to be pretty perseverant when it comes to getting something that I want. Valentines day cupcakes, need I say more? Mommy wanted to include me in the little baking party she had with the boys in celebration of Valentine’s Day, so she let me sit up on the counter (while she stood right next to me, of course), as the baking ensued. Her mistake? Placing me too close to the chocolate goodness. Check out the pictures under “Riley – 9 months” to see me in action!!!

Riley's 8 Month Update!

2010-02-01T13:16:00.000-08:00

Well after about 4 months of living the good life at home with my family, I find myself back in the hospital once again. This time - some sneaky virus that gave me a rash, spiked up my temperature, and caused me to vomit so much that my stomach started to bleed a little. I've been here for about 3 days and should be coming home today. I can't say that I trust the Doctor's optimism, though, because my lab results have been known to come back with some pretty crazy things. In all honesty, I just think the nurses like me so much, they finagle ways to get me to stick around. I'm just saying.

In happier news, I'm just about the best sitter-upper on the planet these days! I'm content sitting upright all by myself without the boppy for support, although it's nice to have it there behind me for those just-in-case moments when I think I might fall. I'm getting pretty good at finding my balance and putting my hand down to the side to keep me up if I start to teeter. Pretty good, eh?

I've graduated to stage 2 baby foods, which I must say, are much more tasty because they've got double the flavor. My favorite is banana/mixed berry. Mmmmm. My mom won't admit that she's tasted baby food, but she secretly likes it too ;) I'm still not a big fan of fruit bites - they're too little and awkward to put in my mouth - but I did have a taste of my very first cookie recently and I was instantly sold! You can check the picture link at the right side of the page for some more cookie-mania fun.

What else? Hmmm. I've dabbled in some new sounds lately, namely my M's. I tried Mamamama out for a while, much to everybody's delight, but then I called it quits. Gotta keep 'em guessing, you know? As of late, I'm back to the old Nee Nee Nee Nee Nee quite a bit because being in the hospital makes me all sorts of angry all the time. My Nee Nee's seem to get the point across that you've made me mad.

I'm still seeing my physical therapist, Meri, once a week at the house, but I'm pretty good at hiding the real me from her observing eyes. I don't really want her to know that I'm a pro at rolling over, so I pretend that it's such a struggle to do so. Mommy and Meri have me trying out some new crawling formation, though. I'll admit it, I do like to pull in my knees and stick my bum up in the air from time to time, but I didn't know I'd have to hold my upper body up with my arms too. At first, I wasn't having it. (Spaghetti arms? ) But now I can tolerate holding myself up in super-crawl mode for a few minutes. Apparently I'm supposed to be working on upper body strength. Hmmm.
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My speech therapist, Michelle, has decided to come see me only every other week now, because I've been doing so well with my eating. Well, before this most recent trek to the hospital, anyway. Before I got sick, I had barely used my feeding tube in about 3 weeks! I'll need to work my stomach back up to keeping down larger quantities of food for the next few days, but I'm hopeful that it won't take long to return to my normal self and soon this whole feeding tube should be a thing of the past.

What makes me laugh, you ask? Well just about anything Jaden does, and of course whenever daddy blows on my face. What doesn't make me laugh is the concept of "crying it out". Have you heard about this torturous bedtime technique? I've only been subject to it a couple of times so far and I sure hope Mommy and Daddy find enough compassion in their hearts never to do that to me again, but I'm not holding my breath. I've heard mommy say it's time for me to learn how to go to bed on my own. I'll keep you updated on that front, but I'm not happy about it, so please pass on the word to my mom and dad.

Thanks to everyone for the well wishes!!

Love, Riley

Riley's 7 Month Update!!

2010-01-03T22:55:00.001-08:00

Hi all, it's Riley again. I'm happy to report that my health is in tip-top condition and I'm still gaining weight! The minor surgery I had to replace my feeding tube with a smaller "button" went very smoothly and didn't seem to bother me at all. Oddly enough, I didn't even need to be hooked up to my feeding pump for the first week after I got the button because I was eating enough on my own throughout the day. But then my GI doctor decided to up my feeds by an extra 2oz per day so now I'm not quite been able to consume it all myself. I'm working on it though...I just had a relapse due to a minor ear infection in the last week ...but my eating habits are starting to return to normal.

The drooling hasn't stopped. In fact, I have a total of 7 teeth now and #8 is on it's way! One would think with all these teeth I'd be ready for some more "solid" food, but I'm not really a fan. I tried out my first "fruit bite" last week, but my tongue seems to have this natural ablity to push anything foreign right back out of my mouth. Check out my video to see how I did!

The good news is that the rice cereal is starting to grow on me, so I guess we should all just be happy for small successes!

I'm starting to talk (or babble) more and more. I've added the "buh" sound to my vocabulary to go along with my Ds and Ns. I LOVE LOVE LOVE to play peek-a-boo, and can even initiate the game by putting a towel up over my face and pulling it off myself!

I still can't get the hang of rolling over from my tummy to my back, but I'm working out lots of other muscles instead. My favorite thing to do is lock the muscles in my legs so that I can get into a standing position. Standing is pretty much all I want to do anymore--it's such a different and new perspective for me so I want to do it all the time! I can also sit up on my own for a couple seconds at a time, but I do really well with a Boppy right behid me. I think I'm almost there!

I'm really reaching out for toys, and anything shiney and new that I see within a 50 foot perimeter. Of course, it's all still going straight to my mouth (well, everyting except for food). I love to sit in my high chair and play with toys in my tray, and I'm getting really good at getting those toys from my exersaucer up into my mouth. I play and play and play and play and rarely seem to get any sleep. Luckily, I'm still cheerful and content pretty much all day long :)

Some repetitive things I've started to do have caught mommy and daddy's attention. First, I DO NOT LIKE to hold hands. It's a phobia of mine, really. If you try to grab onto my hand, I'll wisk it away with a bit of attitude. So please, try to respect my wishes on this one. Second, there's a silly little thing I do when I get SUPER excited! I stick out my tongue just as far as it can go, and curl it up. I do this over and over when I'm excited, and everyone seems to get a kick out of it.

I've experienced a few new things over the past month...

Lots of fun Christmas parties and fancy dresses...

sitting on Santa's lap...

SNOW (just for a few minutes)...

...and my official welcome into the church during the second part of my baptism ceremony (I was originally baptized at Mary Bridge Children's Hospital on the day before my surgery)

Unfortunately, I couldn't quite make it to the official start of the New Year!

Merry Christmas to all...

2009-12-16T23:42:00.000-08:00

Riley's 6 Month Update!

2009-12-01T21:05:00.000-08:00

Turning 6 months old came with lots of "firsts"for me.

For example:

First time playing in my exersaucer. I haven't quite gotten the hang of how all the toys

work just yet, but I'm definately reaching out for them. It's a shame I haven't figured

out how to get them in my mouth just yet!

First time eating rice cereal. I'm not too sure I like it, but I have

no problem openning my mouth for every bite!

First time spitting out rice cereal. I repeat this step after every bite.

First time sleeping in my crib -- in my own room!! I love it! I've always slept through the night thanks to my feeding tube, but my crib is so much more fun to wake up to in the mornings! I don't make a sound...I just hang out and play until Mommy decides I need to get up!

I can't forget to mention that I'm also rolling over like a champ! First came the tummy to back roll...but after much practice we discovered that I could only accomplish this feat when my arms were placed in a very specific position (propped underneath my chin). So still working on that one. Next came the back to tummy roll...which I can do on my own, anytime, anywhere, and OFTEN. Then of course my temper flairs when I can't get back over. Such is life...

Next on the list is speech. Or should I say babble? I'm quite vocal these days and like to let you know what's on my mind all the time. I verbalize my thoughts and emotions in the form of nnnnnnnnnnnnn's and daaaaaaaa's mostly, but other sounds come out every now and then too :)

I've almost got a full set of teeth now! Well, okay 4. But that seems like so many in such a short time! 2 on the bottom, 2 on the top. This makes for a lot of drool, approximately 12 bib changes a day and multiple shirt changes to go along with it.

I'm growing more attached to Jaden. At first, his "in your face" method of playing kind of bothered me...but now I look for him every morning. I hear his voice as he enters my bedroom, and I automatically look to the place where he usually climbs up on my crib to peak over the railing. My gaze stays there until his head pops up over the top, and I smile. He's a great big brother...always thinking of me. Whenever he hears me cry, he instructs mommy to go check on me. And he loves to build me forts...creative, elaborate forts. Mommy doesn't always like his forts though. Especially when they're made up of multiple blankets, pillows and boppys covering my face. I don't seem to mind though....why does she have to ruin all the fun?

Feeding-wise, I'm doing fabulously. I'm up to 6 feedings per day, and I'm typically taking 3-4 ounces each time! Huge improvement over the last month!! I'm eating so much now that my night-time tube feedings are minimal, and as a result, I'm no longer throwing up in the mornings. Although my reflux is still there, it's happening less and less each day! It doesn't seem that I'll need the feeding tube for much longer now...but I'm scheduled for surgery tomorrow morning to have my G-Tube switched out for a Mic-key Button. It'll be so nice to have a smaller and more comfortable and easily managed opening to my tube, even if it's only going to be for another month or two.

Next on my agenda is learning how to eat solid foods. Although I started on the rice cereal about 2 weeks ago, it's still a bit of a challenge for me to swallow without gagging :( Just today I was able to try applesauce for the first time, and in the coming weeks mommy says I'll get to try lots of other new foods! Wish me luck!!

Halloween

2009-11-06T15:01:00.000-08:00

Halloween 2009 was a definate success! We celebrated all month long with various activities and events that would help get the kids into the spirit of Halloween, inclduing various art projects, pumpkin painting, a trips to Fright Fest, Maris Farms and Tricks and Treats Fun Fest at the Federal Way Community Center. As our family grows, we hope to create traditions that the kids will remember and look forward to for years to come.

Fright Fest was fun because it was Jaden's first time being able to ride the rides (well, we did cheat last year at the Puyallup fair and let him ride the cars). His favorite is, by far, the Giant slide...but he was brave enough to tackle every other ride except for the airplanes...not sure why. Little Perry attempted his first upside down ride - the Ring of Fire (twice), and then took down the giant rollercoaster with me (quite a treat for me since I was pregnant when we went to Disney Land a few years ago!!).

We've visited Maris Farms several times over the years, but this year was our 2nd Annual Trip with the Hardwick Family (Nana & Papa, Shaun, Mel, Desi and thier newest addition, Kinley). There are tons of activites there for the entire family, but the most fun is always getting lost in the corn maze :) After picking out pumpkins for the kids, we headed back to Shaun and Mel's house for dinner and pumpkin carving. We feasted on pulled pork sandwiches, white bean chicken chili, and carmel apple cake for dessert. Mmmmm!! Check out our pictures in the "October 2009" Album on the right.

We spent about an hour trick-or-treating on Halloween night. We may have gone longer had we not tired of Jaden's S-L-O-W snail-like pace :) But, his costume didn't quite allow him to sit down in the stroller so we followed him around on foot from house to house. As you can see from the picture, Jaden was a Motorcycle Police-Man. Perry wanted to be a rapper (hence the baggy clothes and the bling), and I found the most adorable and WARM bunny suit for Riley's first Halloween. We brought her around in the stroller with us, which she LOVED...when she wasn't sleeping through it.

The highlights of the evening centered around Jaden, our little 2 year old comedian. At the first house, he tried to push right past the home-owner and walk inside! And for some reason, he refused to say Trick-or-Treat, but opted for a "Happy Halloween" greeting at each door instead! He said "I love you" to one lady, and made sure to let each person know that he was going to go to the next house to collect more candy.

Jaden now asks to have four peices after each meal. Sigh.

Riley's 5 Month Update!

2009-10-21T21:34:00.001-07:00

Hi everyone, it's Riley again. Can you believe I've been out here, blogging to you all for 5 months already? I can tell you that I am SO SO HAPPY to be home again! I was released from Swedish about a month ago, and I've been gaining weight every day since! Here's how it works....I have a goal of 620 mL of milk that I must consume each day. During my waking hours, I drink through a bottle. Some feeds are better than others. I'll be honest, at 5 months old, I'm still not quite an aggressive eater. Basically, I'm averaging about 30-70 mL (that's about 1-2 ounces) per feeding. Whatever I don't eat during the day, I'll take at night through my G-Tube. I'd say it averages out to be about 300 mL per night. The hope is that, the stronger I grow, the more I'll be able to eat orally during the day, to the point where I'm not taking much through my feeding tube at all. I'm working with a speech therapist to improve the coordination of my suck, and she seems to think it's getting a little better. Stay tuned...

I'm also working with an occupational therapist to build my strength. After laying in a hospital bed for a total of 2 1/2 months, I'm a little behind developmentally. But, what I can do is this:

1. Hold my head up on my own
2. Roll onto my side

3. Reach for toys with my hands and bring them to my mouth

4. Kick vigorously with my feet, and hold them high up in the air

And oh yeah, this just in: I'm teething!! I suppose I shouldn't be suprised, I've been drooling for months now! But, just this evening mommy felt a tooth on the bottom trying to pop through, and another beside it that isn't too far behind. Interestingly, Jaden's first 2 teeth came in the bottom too. Anyway, it doesn't seem to bother me too much, I just get a little irritated here and there.

For the most part, I remain a pretty mellow, calm, quiet baby. I love to smile and i'm starting to verbalize my thoughts more and more. I LOVE to look at the TV when it's on and pretty much love any toy that I can get a firm grip on and put in my mouth.

At 5 months, I'm up to 12lbs, 1 oz!! My doctors seem pretty impressed with my growth! Next week, I have a follow-up echocardiogram and cardiologist appointment, so I'll keep you all informed as to the status of my heart.

Love you all!

Uh-oh Some Spedi-Goes...

2009-09-30T23:06:00.000-07:00

Hi everybody. Jaden, here. I'm happy to inform everybody that Riley's been home for almost two weeks now and she's doing great. As for me...well, I've been up to no good over the past couple of months so I want to tell you all about it :)

The terrrrrrrrrrrrrrrrible twos. That's right. Tantrums, screaming, arguing, aggressiveness, name calling, back-talking, hitting, kicking, turning to dead weight, dumping things out all over the floor, etc. Sometimes, Mommy and Daddy literally have to tell me to do something 10 times before I actually listen. This makes for great fun around our house. I've come to know the time out spot very well. And, did you know there are time-out spots wherever we go? Soccer fields, stores, other people's houses, pre-school, you name it...I've been in time out there.

The most fun time is in the mornings when it's time to get me dressed. I generally don't want to wear what Mommy picks out, but I also like to take a ridiculous amount of time choosing an alternative. This is not a pretty site when Mommy is in a hurry. Other times, it's not about an outfit choice...but I'd just rather jump or wrestle or talk about something entirely different when it's time to get dressed. Bottom line, this task is never ever completed smoothly.

Two phrases I hear on a daily basis are:

"watch your sassy mouth" and "keep your hands to yourself"

My response is generally:

"you watch your sassy mouth" or "keep my hands to Mommy (or fill in the blank with the person I am tormenting at the time)"

Sometimes Mommy scolds me with "Jaden Thomas!", to which I simply reply "No, Mommy Thomas!!" Basically, anything somebody tells me, I just turn it around on them. I'm quite the little trickster ;)

One of my new favorite phrases is "I can't" when Mommy and Daddy ask me to do something. For example, they might say "Jaden, come here" to which I respond, "I can't". Or "Jaden, put that down", and I say "I can't". Then comes the counting. "Jaden, I'm going to count to three, and if you don't (fill in the blank), you're going to get a time out. This generally works. I'm usually moving by the time Mommy hits 2.

My other new favorite phrases are "Because" and "I don't know". Here's how they work.

"Jaden, what happened?" to which I respond "Because"

"Jaden, what color is this?" Although I generally know the answer, I must always reply first with "I don't know".

Language. My language skills are developing more and more each day, but sometimes I just don't get it quite right. For example, Mommy will tell me "uh oh, spaghetti-0's", and I'll repeat "uh-oh some spedi-goes". I'm also starting to sing songs on my own. Here is my own little mixology invovling This Old Man, Old MacDonald, and Patty-Cake:

He played 2
He played 4
He had a thumb
Patty ache
Knick knack had a farm
Put it in the oven for Ri Ri
Patty wake, Patty wake, had a farm

Also, my version of the Hail Mary goes like this:

Holy Mary, full of grace, with thee and the hour!

Spelling and Alphabet. Recently I've begun to work on my spelling. I can spell my own name, plus M-O-M and D-A-D! I really like to type them up on Mommy's computer. It's called doing my email.

I'm a pro at my ABC's these days though. I can say it both fast, and slow, but I can't quite carry a tune yet. Oh, and apparently I'm missing the letter N. The part of the alphabet usually goes " L-O, M, O, P. Check out the video below, I got a little mixed up on this particular morning...

Pre-School. I recently starting going to my Alphabet Express pre-school with Mommy at the Commuity Center. We go one day per week, and each day, we learn about two letters of the alphabet. The first day was rough. There were all these new and exciting toys in the room, and I didn't understand why I had to sit around at circle time instead of being able to dig into the toys. Apparently there are these things called schedule and routine that I have to learn about, but I'm happy to report that I did much better at my next class. Each day we each have a special job to do (my favorite is being the line leader), plus we're working on fine motor skills, cleaning up after ourselves and we always get to do fun art projects.

Athletics. I started swimming lessons last month and I'm loving it! I'm not one who's afraid of the water, and I literally can't wait to jump into the pool as soon as I get there. I'm a pro at holding my breath and going under, I love to paddle my arms and kick my feet, and I do pretty well with the back float. My biggest challenge is water safety. For example, I learned that it is not safe to get a running start to jump in the pool, nor is it safe to jump in sideways ;) I also went to a trial indoor soccer practice at the Tacoma Soccer Center. I was the first one to dribble my ball up and down the length of the field! Mommy decided to put a hold on soccer though until Perry's soccer season is over. So instead, I keep myslef busy at his soccer practices by dribbling the ball around the track. I can't wait to start playing myself. I've also become a bit of an expert climber. I can climb all sorts of contraptions, all by myself!!! A couple weeks ago, I climbed a net at the playground while mommy and daddy were on the other side of the field with Perry and Riley. On another structure, I couldn't find steps or a ladder that i could reach, so I improvised by climbing up the slide :)

Independence. Recently, both because of my age and becuase Mommy's been more busy with Riley, I've started to do more and more things on my own. This includes going potty, getting myself dressed and undressed, washing my hands, and putting movies into the DVD player (not always the right way!). I'm still working on finding Baby Boost on On Demand, and putting toys away by myself.

That's all for now, guys (I like to call everyone guys). Be sure to check out my most recent pictures on the right side of the screen, and I'll try to update when anything new comes up! Bye!

New Pictures!

2009-09-20T12:00:00.000-07:00

It has been extremely important to us that, even while most of our time and focus is spent with Riley in the hospital, our other two children do not feel neglected or miss out on any opportunities they would otherwise have. So, in effort to create some sense of normacly in their lives, we've been keeping them active, involved and busy outside of the house with activities that put some focus on them each, individually. Even if that means spending long hours in the car driving from Seattle to Puyallup to pick up Perry for soccer practice in Tacoma two times per week, we will do that for him because he loves soccer and loves being part of a team. On the days Perry doesn't have soccer, we're busy with Jaden's swimming lessons and pre-school class!

Click the links on the right for new pictures of all of our activities over this past month...

1. Riley's Third Month
2. Jaden - 2 years
3. Jaden's in Pre-School!
4. Perry's Soccer Games
5. Jaden's 1st Swimming Lesson
6. Perry's 9th Birthday and the Circus
7. Train Ride/Seattle Center

Wednesday

2009-09-18T16:08:00.000-07:00

G-Tube day is Wednesday!! I know, I know...I've spent a lot of time venting and crying to the doctors, but to know avail. We can't push it up any earlier than Wednesday. The good news is that, assuming nothing else comes up (knock knock), we can go home 24 hours after it's put in. So, we're shooting for a homecoming next Thursday.

The G-Tube may stay in anywhere from 1-6 months, depending on how Riley is doing with her feeding and how well she is gaining weight. For the first 2-3 months, she'll have a 2ft. tube coming out of her stomach, and if she still needs it beyond that, they'll be able to put a little button in that will just open and close right on the surface of her skin. They can't go right to the button because initially, there will be too much space between the stomach and the surface of the skin.

Today the nasal tube was put back in because Riley has lost too much weight over the last 2 days without it. I protested, of course, but if Riley is too malnourished by Wednesday, they won't be able to put the G-Tube in, so we didn't have much of a choice.

So, not a very good day today, but I'm hoping if we just hang in there for another week, we'll be heading home. Please keep us in your prayers!!

G-Tube

2009-09-17T13:00:00.000-07:00

Riley had her nasal feeding tube removed on Tuesday so she could have some tests done - a swallow study, upper GI and small bowel follow-through - all which required her to drink some barium that would allow her doctors to see via X-Ray, the mechanics of her swallow and the anatomy of her GI tract. Everything came back normal!! Since then, she's been back on bottle feeds but she's still being a little stubborn as to how much she's willing to eat. She's also back on breastmilk (although fortified with formula to increase the calories), and I think that's been a little easier on her tummy becuase she' been throwing up less and less. In any event, she will still need some sort of feeding tube to supplement her feeds at night. After everything we've been through, I'm adamently opposed to another nasal tube. I think it continues to irratae her throat and could be one of the reasons she's been throwing up. So - she'll be getting G tube that will be surgically placed directly into her stomach. I put some pressure on the doc to let her get this done tomorrow so we don't have to wait through the weekend. We'll see.

The good news...the inflamation in her liver is still a little high, but seems to be improving. We still don't have a reason or an explanation, but several test results are pending. However, I've been told that as long as the lab results are heading in a downward trend, we'll get to go home. I'm seeing light at the end of the tunnel!!

Riley's 3 Month Update!

2009-09-11T22:31:00.001-07:00

Hi it's me, Riley. Since I'll be 4 months old next week, I thought I'd better hurry and give you an update about my 3rd month of life!

First things first...I know a lot of you have been following Mommy's updates about my current health situation. I just wanted to say a big THANK YOU to everyone who's been checking up on me, praying for me, cheering for me and routing me on. It really means a lot to us to have so much support and encouragement.

It's been a weird couple of weeks. One morning, I was sleeping comfortably at home in my bed, then came a little vomit and before I knew it I was living at the hospital again. Despite the blood draws, IVs and catheters, I've really enjoyed my time here so much that I purposefully sabotage my chances to go home. I try my best not to gain weight, and try to give mommy, daddy and all my nurses an adequate amount of spit-up to clean up several times a day. Then, when it seems as though I'm turning a corner, I come up with a new problem to throw at them...like dehydration and inflammation of the liver.

But, because of all the prayers and support, I'm ready to stop being a trouble-maker and start getting better. I've gained about 7 ounces in the last 2 days, and the spit-up is getting less and less. The first blood transfusion seemed to help so much, that they've decided to give me more...just so that my body doesn't have to work so hard to create red blood cells and burn extra calories. The dehydration issue seems to be improving, but the liver inflammation is still a mystery. So, I get to take more and more tests everyday to figure out what's going on. In fact, today I got to take a field trip with Daddy over to Children's Hospital for a Cystic Fibrosis test that they couldn't preform here at Swedish. It was so nice to get outside...and double prizes that the test came back negative for CF!!

The plan is to stay the course over the weekend. My feeds have been increased from 30 to 36mL per hour, and I'm tolerating it well. I'll have more blood draws on Sunday, and an Upper GI on Tuesday. After that, if my weight is still on the rise, I can try feeding by mouth again and finally be discharged from the Hospital. Fingers crossed!

All this medical silliness aside, I've made some big changes developmentally since last month. For starters, I really like to zone in and focus on people that are talking to me now. My smiles have become more reactive and less gas-induced. I'm working really hard at holding my head up on my own, but I'm not quite there yet (but doing pretty well for a girl who's been laying in a hospital bed for 1/2 of her life!!). I'm also starting to grab onto things much more, although my grip isn't as strong as I'd like it to be. Lastly, I LOVE LOVE LOVE to kick my feet. Whether I'm kicking jingly baby toys, or just the air, it's all the same to me. Sometimes I just lock my legs and stick my feet up in the air, just so that I can have a good look at them. My feet are simply fascinating. Here's a picture of them in action...

All for now...Bye!!
Love, RILEY

Pros, Cons and Plans of Action

2009-09-10T00:03:00.000-07:00

Pros and cons of today.

Pro: Riley has not spit up, gagged, or vomitted in over 24 hours.

Pro: We were able to rule out any kidney problems as contributing factors to her dehydration and liver abnormalities.

Pro: She's back to sucking away on her pacifier (because apparently it no longer gags her). Riley's speech therapist gave her a thumbs up in the sucking department.

Con: Riley lost another 5o grams (almost 2oz) of weight.

Con: Riley's urine output is diminishing, which adds another question of "why?" and also creates an issue when we need to collect urine for testing. She's been forced to welcome catheters back into her life.

Con: Liver tests still showing some elevated numbers, still unexplained.

Con: Blood count still on the low side.

Con: Fussy, angry baby today!!!

Con: A know-it-all "charge nurse" took care of Riley today, but she kept forgetting about about her! Go ahead and send the labs out for testing before you go to lunch, thank you! And is administering her medication on time too much to ask?

Plans of Action:

1. Blood transfusion in progress. This should help Riley regain her strength so that her body can heal and give her the endurance to begin eating on her own again.

2. Metobolic Screening...a series of blood and urine tests that will help us determine if her refusal to gain weight is related to her body's inablity to metabolize a certain component in her diet. The bad news is we need lots and lots of urine for these tests. With Riley's decreased urine output, it could take forever just to collect an adequate sample. Then once we have the sample, it will take a week just to get the results back. Boo.

3. More blood draws for liver testing. Possible liver biopsy in the future. It could be that this minor liver issue is just a secondary effect of her malnutrition or vomitting (fingers crossed). On the other hand, it could be any number of problems in her body that are causing a very slow reaction in her liver. We will test for everything in the universe, apparently.

4. Upper GI on Tuesday. We need to determine whether there is anything blocking the tube that allows her stomach to empty before we even consider surgery. This is unlikely, but we need to have a look. The surgery would basically work to tighten an openning to her stomach that would never allow anything to come back up. (no burping or vomitting, ever again). That being said, it would be catastrophic if we tightened that openning to the stomach if there was something blocking the openning out of the stomach. I shiver to think about it. I met with the surgeon today and he is delightful :) He is leaning against the surgery, but thinks Riley will probably end up going home on a G-tube instead (for those that don't remember, that's a feeding tube going directly into her stomach).

5. No move to Children's Hospital today. It seems like we are making some forward-moving decisions here today, and we are happy with that even if we don't have all the answers yet. The problem with going to Children's is just the fact that we'd have to start over with no guarantee that the team over there would do anything different. So, it's a tough choice to make.

On another note...with liver problems suddenly jumping out at us, Perry reminded me that his younger sister, Tesha Swenhaugen, died in the early 80's because of liver problems when she was just 11 months old. She needed a liver transplant that was never to be. I brought this to the doctor's attention and she asked for Tesha's diagnosis because there are some serious liver problems that can be passed genetically. This, of course, gave us a quick scare...but it turns out that Tesha's diagnosis was not genetic, and not one that Riley is showing any signs of having herself.

Given all the problems we've had with Riley over these past 3 months, I can imagine the horror that Perry's mom and dad must have gone through back then. It makes me sad to think of a family member that we will never be able to meet, but at the same time, it reminds me how lucky we are that, despite some bumps in the road, Riley's surgeries have been a success and her future prognosis remains positive. For anyone interested in Tesha's story, click here and here.

What?

2009-09-09T01:45:00.000-07:00

So...Riley gained 4oz over 2 days (finally!!), but now some abnormalities are appearing in her bloodwork.

Specifically, her electrolytes are low and there's something mysterious going on with her liver. This is where it gets confusing. We're dealing with 5 doctors - Pediatric Hospitalist, ICU doctor, GI doctor, Kidney doctor, Cardiologist. They're all putting their heads together and we don't have many answers yet. One theory is that Riley is just dehydrated because of all the vomiting...but that still wouldn't explain the liver. Although some of her blood levels for her liver were high, they're not so high that they're super concerned...it's just something they're watching and trying to figure out. Riley's medications could have something to do with it, and there's a slight chance her kidney's are behaving improperly. Well, that's what the GI doc thinks anyway...while the kidney doc thinks it must be stomach related. Perplexing.

We also have a difference of opinion among doctors who think her feeds should be stopped again because of her vomitting...although she's not vomitting her formula. She basically just has a VERY sensitive gag-reflex, which makes her spit up loads of mucus/saliva several times a day. I have to say that it's gotten much worse since she was admitted to Swedish, but the GI doc still maintains that it'll get worse before it gets better, and it'll only get better once she gains weight and becomes stronger.

Speaking of gaining weight, I just received a message from Riley's nurse for tonight...she was just weighed again and it looks like she lost another ounce. What?!

The plan is to meet with the Surgeon tomorrow to discuss options and get another opinion. We'll also have the results from another round of blood/urine tests and I'll expect the electrolytes/liver issues to be much closer to a resolution. I've already expressed our desire to have Riley transferred to Childrens', so that may be in the cards tomorrow if we don't feel happy about what direction they want to take. Stay tuned...

Still here....

2009-09-07T20:15:00.000-07:00

After several days of oral feeds by day and infusion feedings by night, Riley made it pretty clear to us that she had no intention of gaining weight. After losing about an ounce per day for a few days, she finally caved a little on Friday morning by weighing in at the exact same weight she was the day before. Thanks, Riley.

That still wasn't enough progress for us, so her stomach doctor ordered 24 hour infusion feeds and that seems to have worked. Saturday morning's numbers showed a one ounce improvement, despite her frequent vomiting throughout the previous day.

That brings up another issue. If Riley was getting continuous feeds through her tube, and no oral feeds, why was she continuing to spit up? Her feeding tube was supposed to have bypassed her stomach, letting formula out straight into the small intestine. Hmmm. I suspected that, with frequent tape changes to the tube on her face, not to mention Riley's mischievous little hands, that her tube had been pulled back into her stomach. Not that the nurses seemed to care too much about my concerns. They completely dismissed my request to have an X-Ray done to check tube placement, and Riley continued to vomit throughout the night.

Fortunately, I am persistent. If one medical provider doesn't adress my concerns, I find one who will. The stomach doctor thought it was a good idea to have an X-Ray done the next morning, and guess where her tube was? Not in the small intestine anymore!

Now Riley is rockin' a new tube and the vomiting has mostly subsided. Now she sort of dry heaves and spits up a little saliva from time to time. And let me tell you...the girl is drooling like crazy! Teething, already? Could be. The theory is that all of the saliva she's producing is a little too much for her to handle, which is why she has been gagging and spitting up so much. Another theory is that, having the tube in place is acutally keeping open the little sphinctor between her esophagus and her stomach, allowing her food to come back up. A catch 22, that feeding tube is.

Since the tube replacement, Riley was moved to the regular Pediatric Unit, but she has yet to be weighed. She's on the schedule for sometime tonight, so I'll be interested to see what she weighs with 24 hour infusion feeds and no vomiting. The plan is this: If she's not gaining enough weight, we're calling in for a surgery consult. Surgery may consist of the placement of a G-Tube (feeding tube going directly into her stomach), and/or a more major surgery that would tighten that opening between the esophagus and stomach. Perry and I have decided that, before any major surgery takes place, we're bringing Riley over to Children's Hospital, or at least consulting with somebody there.

On the other hand, if it really looks like Riley's turning the corner, and her weight is up, we can probably come home in a few days. I keep saying that, don't I? I don't really believe that at this point....but my hope is that she should at least be home by the end of September. I think that's giving Swedish MORE than enough time to figure out what's going on, right?

Feeding Tube

2009-09-02T22:28:00.000-07:00

Riley is doing well on all counts except for the reflux. She continues to vomit after almost every feed and her weight has started to decrease over the last couple of days. We met with therapists from Speech and Occupational Therapy, and it was evident to them that Riley's muscles in her mouth, throat and stomach are very week. It is very likely that this constant reflux is happening because she has been unable to put on enough weight and build muscle. So...enter feeding tube. She's back on her night-time drip feeds, and still eating orally during the day. The reflux should eventually clear up as Riley grows stronger, but if it doesn't, there is a surgery that we may consider down the road. For the short term, she'll be discharged after a couple days of weight gain and stay on the feeding tube for at least a few more weeks.

On a positive note, Riley is consuming much more with each feeding. Where she used to average about 30-45mL per feeding, she's now taking 60-80mL. The goal is aobut 90mL, the equivilant of 3oz, so she's almost there! Now, if she could only hold it down!

Riley also had an echo today, and from a cardiology standpoint, everything looks great. In fact, the VSD (hole in the heart) looks smaller than it did on her echo in July, so we are very hopeful that it'll close on it's own and let us off the hook from another heart surgery in the future.

Riley Update

2009-08-30T12:39:00.000-07:00

Riley started on her new formula yesterday and she seems to like it. She's eating well, but unfortunately she is still vomiting here and there. The good news is that she's no longer vomiting blood and there is no more blood in her stool. Her blood pressure seems to have gone back down and resolved itself, but we're still continuing to run the tests and plan on speaking with the kidney doctor tomorrow.

Riley's weight is up to 9lbs, 10oz (a gain of 8 oz since Thursday) but that can most likely be attributed to her IV fluids. The doctor's think that its probably pretty unlikely that she has a milk protien allergy, but the plan is still for me to go dairy free just to cover all of our bases. A speech therapist will come to see Riley today or tomorrow to see how well she's eating. One theory is that she may not be eating much because she's just uncoordinated and never really learned how to use the muscles in her mouth/jaw to suck properly. I'm not hedging any bets on that one though...we saw a speech therapist at Mary Bridge and the consensus there was that Riley was eating/sucking just fine.

We should know more tomorrow...

Double Trouble

2009-08-29T00:28:00.000-07:00

Yesterday morning around 5:45am,we awoke to a screaming Riley. She refused to eat, so my plan was to get out of bed and walk with her around the room to calm her down. As soon as I got her to an upright position, she started vomitting blood!! We contemplated whether to take her into the ER right away, or just wait until our scheduled appointment with her cardiologist at 9:30...but in the end we decided it was best to get her into the ER. I brought her up to Swedish so that our cardiologist would have access to her, if necessary. This was a good decision, because she ended up being admitted back into the PICU. We weren't able to determine for sure yesterday what was causing the blood, but she continued to throw up throughout the day and her stool had also tested positive for blood. Riley's blood pressure was also slightly elevated, and her blood count was low so there was talk of a possible transfusion.

While Riley was being admitted to the PICU, Jaden slipped and took a head dive onto his toy truck. He seemed to have cut himself right at the brow line pretty deeply, so we decided to take him to the doctor for possible stitches. Fortuneatley, the doctor said that Perry did a great job keeping the wound closed with tape, so all they did was clean it and reinforce it with some type of glue and additional tape. The bandaging will be able to come off in 4 days, and Jaden handled it like a champ.

Riley spent the night at Swedish and went to the OR for an Endoscopy at about 8am this morning. The GI doctor found some irritation in her esophogus along with a small, superficial ulcer in her stomach. This could have been caused from her feeding tube, but given that the tube has been out for 2 weeks now, we can't be certain. Another possiblity is that Riley may have an allergy to the protien in cow's milk. So as a precaution, Riley will start on a specialized formula for two weeks until I can clear all of the dairy out of my system. Once I have been on a dairy-free diet for 2 weeks, she can begin nursing again. I'm not sure how long I will have to remain dairy free, but it is likely that if Riley does have this allergy, she will grow out of it eventually.

They have ruled out the idea of a blood transfustion for now, but she'll probably start taking some iron supplements soon to help with her blood count. As for the high blood pressure, she's getting a complete kidney workup (ultrasound, urine testing) and we'll talk to the kidney doctor on monday.

The good news is that none of this seems to be cardiac related. The bad news is that she hasn't gained any weight since her feeding tube came out 2 weeks ago. She's also pretty uncomfortable, continuing to vomit, and not holding down fluids. She won't be able to start on the new formula until she can prove that she can hold down clear liquids, and so far that hasn't happened. She's also being poked a prodded continuously. It's pretty hard to find an IV line on babies anyway, and cardiac babies, in particular. Riley's probably been poked about 10 times already for 3 IVs...with the first IV crapping out over night, and the second IV being pulled out by Riley herself (I blame the poor tape job). To make matters worse, neither of the 3 IVs they did put in were big enough to get blood draws from, so she had to be poked several more times for blood samples :( Oh - and as for the urine testing, Riley was introduced to the joys of a catheter (which, btw, was manufactured by her nurses out of a feeding tube, since the regular catheter was too big!!!).

So, it looks like we've got another pit stop in the hospital for at least a week. We'll keep you posted!!

Jaden and Riley

2009-08-21T02:52:00.000-07:00

Jaden has been an incredible big brother over these past few months.

His life has changed tremendously and he's adjusted much better than we ever anticipated.

He loves to hold Riley (and in fact, gets upset when he can't), sing to her and play with her.

He's also very good about reminding us not to forget her when we leave :)

Thank you, Jaden...for being so loving and supportive of this new addition to our family.

You are amazing, and Riley is lucky to have you in her life!

3

2009-08-18T11:50:00.000-07:00

Vacation Week

2009-08-13T00:16:00.000-07:00

Many people thought it was crazy that Perry didn't take a ton of time off from work while Riley was in the hospital....but it made perfect sense to us for 2 reasons. One - we would have much rather used his vacation to spend time together as a family, relaxing and doing things that we love to do together...rather than sitting in a hospital room feeling helpless. Two - every year Little Perry spends two non-consecutive weeks with us during the summer. We look forward to those weeks every year because it creates such a different, valuable dynamic for our family. Being parents to him for only 2 days at a time throughout the year is tough, and it's nice to have extended time to bond and connect with him during the summer. So...Perry and I made the decision to save some of his vacation time for when Riley was out of the hospital, and we could schedule some time for LP to come and stay with us. Here is how we spent our week...

It was over 90 degrees every day so we spent a lot of time at the beach. The boys enjoyed

Dash Point at high tide.

Perry mastered the art of walking on water...

Riley and I hung out on the beach...

Jaden enjoyed pouring water both on and near his head...

And Perry and Daddy played football as the sun set.

On Wednesday, we escaped to Lake Chelan for a few days...our first trip as a family of 5! We learned quickly that road trips are not a lot of fun with a newly potty trained 2 year old! Lots of potty breaks, plus one wrong turn landed us at our destination about an hour behind schedule. Interestingly, the weather in Chelan was cooler than it was at home for the 3 days we were there. It was nice to get a break from the scoldering heat and relax in a beautiful, air conditioned, waterfront condo!

Jaden enjoyed his own personal boat...

...while Little Perry spent most of his time flying through the air!

Jaden soon grew tired of the lake, but had fun playing in the sand.

The water wings were a big hit in the pool. We had fun teaching Jaden some swimming basics, and discovered that he's definately ready for swimming lessons!

We took a break from the water and played at the park...

...and Jaden showed no fear on each and every climbing aparatus that challenged him. The frightened look on my face is accompanied by my screaming at Perry to stop taking pictures and run over to help me!!

We had a lot of fun, but the best part of ur vacation, by far, was the rest and relaxation had by all!

Perry and I ended the week with a day out on our friend's boat for Seafair. The weather was perfect, the blue angels were amazing, and it was great to spend a fun day with good friends!

August 6

2009-08-06T10:30:00.000-07:00

On this day four years ago, we became husband and wife. Since then, we've survived 2 pregnancies, 3 1/2 years of law school, 1 bar exam, 4 surgeries, and some definite heart ache. Each challenge has made us stronger, and shown us that together, we can accomplish anything. Thank you for continuing to be my rock through the hard times and for giving me the gift of 3 beautiful children to share with you. I look forward to facing and conquering each new challenge the future holds for us.
Happy Anniversary, babe. I love you!

An Update from Jaden!!

2009-07-27T23:17:00.000-07:00

Remember me? Jaden? I know that many of you kept up with me on my former website, www.totsites.com/tot/jaden_thomas. That site is still up and running but you can view all future postings and pictures of me here on our family blog. In fact, mommy updates the link on the right side of this page titled "Jaden - 2 years old" with new pictures of me all the time. So be sure to check them out!

I haven't posted anthing since my 2nd birthday in April, so I've got some catching up to do. Here goes...

Riley. In the weeks leading up to Riley's arrival, I thought it might be fun to give Mommy and Daddy a hard time by forgetting how to sleep through the night. That's right. I'd wake up several times a night and usually end up waking up in their bed the next morning. After a while though, they caught on to my trick and stopped bringing me back into their room. Instead, either mommy or daddy would lay back down with me for a couple minutes (sort of repeating our bed time routine) and then give me a big hug and kiss before going back to bed. It was fun for a while I guess, but then one day Mommy was off to the hospital and any kind of routine I once knew of was out the window.

It was fun visiting the hospital. Epecially once Riley was transferred to Mary Bridge. I was able to drive my motorcycle all around the hospital to help me get around much quicker. They had a family room with lots of toys to play with, and I was even able to bring some back to our room! The best part, though, were all the cool nurses. Some of my favorites were Bonnie, Katie and Christy, but I gotta say I was pretty popular with all the nurses (I'm pretty sure it had something to do with how cool I looked on my motorcycle).

I have loved Riley ever since the first day I met her. I really like to hold her, touch her, burp her and console her. I like to talk to her in a really high pitched baby voice, and you might hear me saying things like "hi Riley!", "it's okay, Riley!", "Riley's happy!", and "Riley's dancing!". Overall I'm really good with her but sometimes I forget to be gentle. It's never mean tempered though, sometimes my mind is just on other things and I don't realize that it's not a good idea to push down on her when I'm trying to get up, or pull her hand really hard when I want her to give me a high five. I'm learning though, and it's getting better.

Time Outs. Lately I've been visiting time out pretty frequently. First, it was because I learned and utilized the word NO. This happened a lot in the hospital - like when I responded with a NO when Mommy requested that I stop doing wheelies with my motorcycle. After a few weeks, I got more creative. I learned not to say No, but envoked the not listening technique instead. Like when I would ignore Daddy's requests for me to come back inside Riley's hospital room 5 times in a row. I'm still pretty much a pro at the not listening these days - espeicially when they tell me to go somewhere that I don't want to go (like inside, or to the bathroom). I'll either ignore them all together and pretend I'm not listening (while looking right at them the whole time), or I'll just tell them what I'm going to do instead. I'm also good at not listening when mommy tells me not to touch something, like Riley's binki. And the most recent development has been not listening when Mommy tells me to stop screaming and use my words. But, I hear Riley screaming from time to time and she never gets in trouble...so I figure I should be able to do it too!!

Potty. I'm happy to report that I am pretty much fully potty trained!! I only wear diapers for nap time and bed time, otherwise I wear my own big boy underwear around all day! I'm really good at telling Mommy and Daddy when I need to go potty, and I can hold it for a while if we can't get to a bathroom right away. I'm also pretty much done with the froggy potty, and instead I'm using stools to stand at the toilet like Daddy!!

Academics. I think I mentioned in my last post that I can identify a hand full of states on the US map. Well, I'm not sure what my exact count is up to now but we can add some mid-west and east coast states to the Pacific Coast states that I already knew before. I can also say my ABCs (although I don't really have the melody down just yet). I'm really good at the last part too...It goes: "I don't know my ABCs, next time won't you sing with me!!"

Athletics. My coordination and motor skills have really improved over these past few months. I'm now running EVERYWHERE, and you should see me jump on my trampoline! I can climb up, over and around things, and even try to teach other kids at the park how to climp up the tricky ladders and steps they sometimes have there.

Speech. On my 2nd birthday, I was pretty much talking in full sentences, but now I'm spouting out full paragraphs. I have a motormouth that never stops. I like to give people the play by play about what I'm seeing and hearing all the time.

Example: "Daddy's outside. Daddy doesn't want to come inside. Daddy turned on the lawn mower. Daddy doesn't want to turn it off. Daddy will cut all the grass and when Daddy's done he will turn in off."

I like to repeat EVERYTHING that I hear...but sometimes I don't quite get it right. Yesterday, Mommy asked Daddy if his shirt was dirty, and he said "yeah, I've got some crap on it". So I asked, "Daddy, is your shirt crap?"

I'm also very sociable and like to talk to everyone I see. I said "hello sweetie-pie" to a lady at Target the other day, and often like to tell EVERYONE "this is Riley" when I'm out and about with my sister.

Finally, some of my words are starting to be a little bit bossy. I like to tell Grandpa to go in the house when I'm leaving with Mommy, I liked to tell the nurses to go to work, and once I even told my Papa to get out of the car when I was heading to the store with him and Nana! I'm having to learn that I'm apparently not the boss :(

Independance. Since Riley's been home, I've been kind of forced to become more independant and start doing things on my own - like climb up in my car seat myslef, put my own sandals on, get my own tissue to blow my nose, and going potty by myself. The best part has been being able to play in the back yard by myself! We have lots of windows facing the back of the house, so mommy can always keep an eye on me if she has to stay inside with Riley. I've really embraced my independance and I like doing things by myself now. I like picking out my own clothes (especially my "cool shirts", aka tank tops), getting myself dressed, and NOT holding hands when I walk up and down the stairs. I've also gotten pretty brave...and I like to do things like ride my motorcycle down a big hill in the back yard, and jump down from high places!!

Growth. So...at first mommy just thought I looked bigger because we've got little Riley in the house now, but we were looking back at some pictures from my 2nd birthday and on that day I was wearing shoes that no longer fit me, and rolled-up jeans that are now too short for my legs! So yeah...apparently I've really shot up in the past few months!

That's about all for now. All in all I've handled the new transition with Riley VERY well. I love being a big brother, I love being adventurous, and i LOVE to talk. That's my life these days!

Riley's 2 month update!

2009-07-22T00:19:00.000-07:00

Hi everyone, it's me, Riley! Here's a quick update about how things have been going for me in this past month.

Last week in the hospital. The regular pediatric ward was much more comfortable than the PICU. Fewer big, loud, blinking machines, mommy's fold out bed was right next to my crib instead of at the back of the room, and the best part...we had our own bathroom. Not that I used it...but Mommy and Daddy were pleased that they no longer had to help Jaden go to the bathroom using a small pull out toilet from underneath the sink. Crazy, I know!! Mommy and Daddy were able to hold me much more there, Mommy was able to feed me again, and the needles and tubes seemed to disappear more and more each day.

Home. I left the hospital to go home when I was 6 weeks old. Unfortunately, i had to go home with my feeding tube still in place, but just until I start putting on more weight. Mommy nurses and bottle-feeds me during the day, and I'm hooked up to continuous tube feeds for 12 hours at night. The benefit to this is that I never wake up in the middle of the night cranky or hungry. I think Mommy likes this too! I sleep from about 10pm to 6am, and generally lay in my little crib next to Mommy's bed quietly and contently until about 9am when she turns off my feeds.

Weight Gain. For my first week home, I gained about an ounce per day, but then I seemed to plateau in my second week. My doctors were not happy about this, so Mommy kicked my feeding schedule into high gear. She makes sure I eat at least every two hours, if not more. She's using the bottle a lot more now so she can add extra calories to it with formula, and so she can monitor how much I eat. But guess what? I'm kind of starting to not be such a bottle fan. I'd rather have Mommy nurse me, and in this past week, I've really let her know that :) But, to no avail, she's being persistent about the bottle. I guess it's because for my 2 month check-up with Dr. Anderson, I was only in the 3rd percentile for weight. Oops :)

Developments. Most changes for me have really occured in this past week. I started smiling around week 6, but it was really just the occaisional, while I'm sleeping, gassy smile. Now I'm acutally smiling at Mommy in response to her funny faces and noises. I'm also starting to be a little more active. I like to squirm and wiggle and dance all of the time. I do this quietly, so it's cute and fun for onlookers to see :) Actually, I don't really exercise my vocals all that much. I'm a pretty mellow baby and don't really like to cause much of a ruckus. There's so much noise in the house with my big brother talking a mile-a-minute all the time, that I'd just rather give him the spotlight for now :) Sometimes I do get upset when I need my binki, or when Mommy has to change the tape covering the feeding tube on my face, but that's it.

Likes and Dislikes. I like to be swaddled, I like my binki, I like to sleep, I like my bath, I like to be held and I like being cuddled up inside Mommy's sling. I don't like my bottle (but I tolerate it) and I don't like having my clothes or the tape on my face changed. Most of the time I like my doctors, but I REALLY dislike having my blood pressure taken.

Brothers. I've only seen little Perry a couple of times since I've been home, but I'm really comfortable with him. He's a great baby-holder if you ask me. I'm not too sure about Jaden, though. He likes to hold me too, which is fine until he starts poking me everywhere. He makes me give him high fives, combs my hair, shoves my binki in my mouth, and kisses my face all the time. Sometimes its nice - other times, not so much. I guess it is pretty nice that he sings me songs though...Twinkle Twinkle and Pat-a-Cake are his favorites.

That's about all for now. Be sure to check out my pictures and growth chart on th right side of the page to view my progress. Thanks to everyone who has been following my journey so far, prayed for me, and helped my family through these last couple of months. Can't wait to meet all of you!!

Our First Weekend Home!

2009-07-05T16:21:00.000-07:00

Riley came home on Tuesday evening and she's had a great first week! She'll be on her feeding tube probably for a couple of weeks until she starts eating more on her own and gaining more weight. Luckily, we only have to tube feed her at night, which allows her to be much more mobile during the day. She breastfeeds every two hours mostly during the day, but we also give her a couple bottles here and there so we can try to monitor how much she's eating. Generally, she eats about an ounce per feeding.

Riley also came home with six different medications, many of which she needs 2 or 3 times per day. She takes the meds through her feeding tube, and once the tube comes out, she'll be able to take them orally. The cardiologist from Mary Bridge said the plan was to wein her off the meds one at a time...so it'll probably be a few months before she won't need most of her medications anymore. But starting Tuesday we're going back to see Dr. Krabill at Swedish so she may have a different plan.

We'll also be following up with Riley's pediatrician, a stomach doctor, and a speech therapist in the coming weeks. The stomach doctor will deal with Riley's reflux issues and the speech therapist is basically just checking to make sure Riley's oral feedings are going smoothly, and that she is able to swallow successfully after being off of oral feeds for about a month. I think she's doing just fine feeding orally, but I guess it's just a precaution.

Nurse Barbara, (or "Bama" as Jaden liked to call her) from Mary Bridge, came out on Thursday to make sure everything was going smoothly with the feeding pump and she did an assessment on Riley while she was here. Since RIley's weight on Tuesday was 7lbs, 3oz., we were excited to see that she weighed in at 7lbs. 10oz. on Thursday! So, she seems to be putting on the pounds (or ounces) and she's not spitting up as much. Good news!

On Friday, we brought Riley out to meet my Mom's side of the family. Our cousin Jaxon had his first birthday party and it was so nice to be outside in the nice weather around people other than medical professionals!

On Saturday, Riley met her Great Grandma Lemmon for the first time! Notice the coordinating outfit :)

We celebrated the 4th of July with more of my mom's family at their property out in Graham.

Please also check the blog post below, written by Miss Riley herself! She wrote it a few weeks ago to give you all an update from her perspective, but I forgot to post it!!

Riley's 1 Month Update!

2009-07-05T13:45:00.000-07:00

Hi it's me, Riley. I'm having a really good day today so Mommy said I could get on the laptop and tell you all a little bit about myself :) As you already know, I've spent most of this last month hanging out in a hospital bed. NOT fun. I mean, let's face it...I'm still pretty young so my most favorite activity is sleeping. But how can anyone be expected to get a decent nap it with people constantly coming in to poke me with needles, take my temperature, change my diaper, put that cold stethascope thing all over me, etc.? And then about every 4 hours there are more people coming in to "massage" my back and chest. They call it a massage...I call it a beat down! I don't even need to mention all of the tubes constantly coming and going from my nose and my throat. Seriously? Is this how it's always going to be? Sometimes I feel like maybe life was better inside the womb!

Sorry about that...I just needed to vent for a minute. Honestly, I'm not really as cranky as I make it sound. Unless the doctors stop my feedings...then I'm really mad! Generally, I make myself known when people mess with me, but for the most part, I'm a pretty mellow baby. When I'm not pumped full of pain medication, I'm pretty alert and aware of my surroundings. I've been told that I am very strong...I can hold my own binki in place with my hand, pull my feeding tube out of my nose, and swat your hand away if you are bothering me. This may have resulted in getting myself labled as "fiesty"!

My favorite things to stare at include bright monitors and mommy. My favorite things to listen to include beeping monitors, mommy's songs, and jaden screaming "Hi nurses" every 5 seconds. I LOVE to be swaddled and tend to do my best sleeping that way. And I'm starting to love my binki too...although it took a while for me to warm up to the idea. The "sweeties" (sugar water) everyone puts on the tip of my pacifier has definately helped!

I've been told that I'm pretty cute, although who could really tell with all of the tape stuck across my face and tubes sticking out from every orface? I'm also a little on the slim side...which I tend to be a little embarrassed and self-conscious about. Jaden's favorite nurse, Bonnie, mentioned that I was skinny last night and I burst into tears. I felt much better once she called me thunder thighs! Luckily, the doctors have increased my feedings so I'm hoping to put on a few pounds sometime soon.

In the last few days, Mommy and Daddy have been able to hold me a lot, which has been nice. Sitting upright and having lots of movement and pats on the back has really helped to move the junk around in my lungs and I've been breathing much better. Grandma, Grandpa, and Nana have helped with that too. I love all the cuddles and can't wait to have more of it. I hear I may be headed home soon. Not sure what home is, but it sounds nice!

Homeward Bound

2009-06-29T12:16:00.001-07:00

Riley's coming home tomorrow!! She'll come home on the feeding tube but the plan is for her to tube feed only at night. We've turned her feeds off for the day and if she does well with her oral feedings (gains weight, doesn't spit up), we'll continue the oral feedings during the day at home and keep her on the tube at night. We're not sure how long she'll have to be on the tube...but if she continues to gain weight and tolerate her feeds, it shouldn't be for long. She'll also come home with several medications for her heart, blood pressure and reflux issues. Somebody from Home Health Services will be coming by today to teach us how to use her pump and administer both feeds and medications through her tube.

The situation isn't ideal, but we're just so excited to bring her home!

Catch 22

2009-06-27T16:20:00.000-07:00

Here is the dilema we face. We want Riley to gain weight, so we've got to keep the feeds going through her feeding tube. On the other hand, we want Riley to start eating by mouth, so we want to stop the feeding tube so she will be hungry enough to eat. On the other hand, she may have a reflux issue so we want to keep the feeds going in case she spits up all the milk going into her stomach. But if she doesn't have room to digest the food going into her stomach, then she's going to spit it up so maybe we should stop the feeding tube.

Are you confused yet? We sure are. So...we've decided to stop the feeds briefly about an hour before she eats. But, this is hard becasue sometimes she falls back asleep when we're ready for her to try eating. This makes nursing difficult, but she does alright with bottle feeding even when she's tired. So far today, no spit ups, so that's great news. But, she lost about a 1/2 oz. yesterday so we need to see some weight gain to know that we're moving in the right direction.

A home therapy specialist came in to talk with us today about the possiblity of taking her home with the feeding tube. They would teach us how to tube feed, give us all the necessary equipment, and even do some home visits to make sure things are going okay. We're not sure if that's what the Doctor will order before discharge...but although it's not an ideal situation, we're all for it if it means we can take her home sooner!

One Step Closer to Home

2009-06-26T00:06:00.000-07:00

Riley's still doing pretty well. We get to try nursing tomorrow, and if she tolerates that, they will pull the feeding tube from her intestine and back into her stomach. It'll likely stay there for a couple more days until we are sure she can take enough volume by mouth. Before her surgery, Riley was just too weak and tired to eat enough. Since she's now older, stronger and more alert, we're hoping she'll do just fine.

Moving Day

2009-06-23T22:33:00.000-07:00

Riley was transferred out of the PICU today and moved to the general pediatric unit. We have a release date estimate of about 10 days, depending on how well she is tolerating her feedings. She wieghed in this morning at about 7lbs. 1oz., but she's been spitting up her feedings all day. It may have something to do with the fact that she decided to pull her feeding tube out quite a bit this morning. An X-Ray this evening confirmed that she pulled it enough to move it up from her intestine, and is now coiled in her stomach. So, tonight she is back on IV fluids and she'll have to visit radiology in the morning to have her tube re-inserted before she can start her feeds again. The goal is to see her gain more weight over the next few days before she can start feeding by mouth. If she tolerates that for another few days, she should be released home.

Her lungs look great, her heart looks great...so we're almost there!

A Good Day

2009-06-22T23:06:00.000-07:00

Riley has been breathing on her own for about a day and a half now and her lungs are still sounding great! Dr. Dietrich's plan to keep her off C-Pap has actually been working! He said that he thinks the C-Pap has actually been useful for making her lung inflate, but wasn't allowing it to deflate (as it normally would with the help of a functioning diaphragm). The new medications she is on have also been helping to break up her mucus so not only are her lungs staying open...they are sounding much more clear. We've also been able to hold her a lot more now that she's been off the C-Pap and the movement and lots of pats on her back have helped to keep the mucus moving around as well. The goal now is to fatten her up. She weighed in yesterday morning at a shocking 6 lbs., 12 oz, which means she's lost over a pound since she was born :( Other than that, she really looks great. Much more comfortable, alert and happy. YAY!

Spending Father's Day together yesterday :)

Riley and Jaden playing together today :)

Our Birth Story

2009-06-21T21:48:00.000-07:00

In reflection of the one month that has passed since Riley came into the world, I realized that I never took the time to share or document our birth story. Although it seems like ages ago, given all that we've been through since then, it's fun to reflect on the journey we took to bring her here and I'm happy to share it with all of you.

We were excited to skip the spontenaity of it all to schedule an induction. Dr. Martin (who I have loved since she delivered Jaden) thought a scheduled, controlled delivery during the day would be best given Riley's need for heart surgery. So we set a date - Monday, May 18, 2009. We weren't sure what time we would be called into the hospital - as it all depended on space availablity in the labor and delivery unit on that day. Luckily, the hospital called around 7am and asked us to be there by 9am, so we didn't have to wait around all day! Perry and I hustled to get ready and get Jaden out the door. We dropped him off in Seattle with Nichole where she was nannying for the day. After saying good bye and hitting every single red light from Madison Park to Capital Hill, we arrived at Swedish around 9:30am.

After checking in, settling into the room and filling out a ton of paperwork, I got started on Pitocin to induce labor around 10:30 am. The timing gets a little shady from here (that's what I get for waiting a month to document this!), but my parents and Paula arrived shortly thereafter. I started feeling some mild contractions over the next few hours, but nothing painful or even too uncomfortable. For the most part, I just hung out, drank some gatorade and watched some episodes of Friends (Season 8 - where Rachel is pregnant).

I was dialated to a 4 and Dr. Martin came in to break my water somewhere around the 1 o'clock hour. Question - how on earth did I not notice my water breaking with Jaden? I don't want to get too graphic but let me just say that the water (also known as amniotic fluid) kept on coming for the next couple of hours! Everytime I would move or adjust, hey here comes more water. Craziness. As expected, the contractions started picking up from there although still not horribly painful.

Probably somewhere around 3pm I noticed myslef getting incredibly irritated. The contractions were more consistent, but still manageable. I didn't mind them as much as I minded everyone in the room constantly asking the doctors and nurses how much longer it was going to take for Riley to get here. Seriously people, stop rushing me...it'll happen when it happens!! My nurse, Lisa (who was awesome, btw), was pretty tuned into how I was feeling and was incredibly supportive. She decided it was time for my epidural (even though I was in no rush because I wasn't feeling any pain yet), and kicked everyone out of the room to give me a break.

The peace and quiet was nice for a moment but the anesthesiologist and his cute new resident doctor (Lisa said he was cute, not me!) arrived quickly. The anesthesiologist was hilarious - his name was Hans or Franz or something to that effect, and he had the thick Austrian accent to go along with his name. He kept making jokes and referring to all of his needles and tubes and other medical equipment as "the thing" when instructing the cute young resident doc. It 50% made me laugh and 50% made me wonder if they knew what the *&%$ they were doing! Lisa kept assuring me that everything was going just fine :)

The whole epidural process seemed to take much longer than it did when I had Jaden. I expected just to get a quick poke and be done with it. Apparently the pain I was in the last time around overshadowed the whole experience and made me forget. By the time were were done, I was feeling some tingling in my legs all the way down to my toes, and even some tingling up my back. Bottom line - I was MUCH more numb than I was the first time around - which scared me a little, but luckily I never completely lost feeling anywhere except for my mid-region.

My parents and Paula came back in after the Epidural and I was feeling much better and re-juvinated. Lisa checked me again around the four o'clock hour and guess what...I was STILL a 4! She also said Riley was pretty high and posterior - meaning that she needed to move forward and down before we were going to get anywhere. The group left again to let me get a nap in, but Dr. Martin arrived about 15 minutes later to see how things were moving along. After hearing that Riley was still high and posterior, she basically said that it would probably be the on call doctor who would be handling the deliver later that night. Boo! She stayed to chat for a while and I started to feel some pretty painful contractions. I could feel them right in the center of my tummy, but nowhere else.

Dr. Martin wasn't going to check me, given that Lisa had just checked less than 30 minutes eariler, but because of my contractions she decided to check just before she left. We were all suprised when she announced that I was fully dialated and Riley was ready to go!! What??! Dr. Martin had me push a couple times before demanding that I stop because it wasn't going to take much for Riley to arrive. They had to make sure the NICU team was in the room and ready for her before I could push anymore. That gave my parents and Paula a little time to come back from Happy Hour (really?), and they arrived just in the nick of time.

I gave two more strong pushes, without feeling a thing, mind you...and then while we waited for the next contraction to hit, Dr. Martin said Riley was so close I could probably laugh her right out! As if on cue, Nurse Lisa proceeded to tell 3 silly jokes of the laffy taffy variety. I laughed of course and sure enough, Riley descended even more. I gave one final push and to my suprise, she was suddenly laying on my chest! I believe this whole process lasted about a total of only 4 minutes!

She was covered white gooey vernix and looked pretty blue. I didn't notice, but apparently it took her a few seconds to breathe, but she finally gave a good cough and started breathing normally. They let me hold her for about as long as it took Dr. Martin to cut the umbilical cord, and then they took her to the other side of the room to be examined. Her APGAR scores were 9 and 9, so we knew she was doing well for the time being. Once Riley was done being cleaned off and examined, I was able to hold her for a few minutes before she was wheeled up to the NICU, with Daddy following closely behind.

That's Riley's story. I find myself comparing the story of her birth to Jaden's story all the time. It's amazing how each experience can be so completely different. Riley's birth was so much faster and much less painful...perhaps it happend that way to give us some reprieve for all that was to come in the month following. Never again will we ever take for granted our health and the health of our children. And even when we feel defeated at times during this process, we remain grateful that we have two very strong and healthy boys who have been extraordinary throughout all of this. They love their little sister and want her to be home with us just as much as we do. So let's get moving Riley, it's time to come home!

Yet another Bronchoscopy!

2009-06-20T23:16:00.001-07:00

We found out this morning that Riley's left lung collapsed AGAIN! Can somebody please figure out why this is happening, please? Dr. Dietrich did another bronchoscopy but this time he was able to extract A LOT of mucus from her airways before blowing air back into her lung. She was given some medication to help thin out the mucus so hopefully that helps. She was taken of C-Pap today because clearly it hasn't been helping. Instead she just has a small nasal tube giving her extra oxygen that she doesn't seem to mind too much. She's been tolerating her feedings today, thank goodness...because at 1 month old, she still weighs less than she did at birth.

In other news, one of the nurses took one of Riley's outfits and threw it into the Hospital laundry...and now we may not get it back. If it was any other outfit, we wouldn't care...but it just happened to be the outfit that Perry bought when we found out I was pregnant for the first time. Both Jaden and Riley wore the outfit home from the hospital and we were hoping to keep that tradition for all of our children. Sad!!

Still on C-Pap

2009-06-19T10:14:00.000-07:00

Riley had another respiratory episode yesterday. I had just left the hospital and picked up Jaden from my parents house when I got the call. She had turned pale and started breathing very heavily. An X-Ray showed a total collapse of the left lung again and Dr. Dietrich, the ICU doctor on this week, did a bronchoscopy at her bedside. He sucked out some mucus, blew air back into her lung, and confirmed Dr. Woods' findings on the first bronch that there is nothing constricting the airways. Her lung is back up but this morning's X-Ray showed some haziness in both the right and left lungs. I think the plan is for her to stay on C-Pap again today.

The theory is that Riley probably just aspirated some of her milk into her lung, and it was an isolated incident. She's off of her feeds (poor thing, she's hungry!!) for now and Dr. Dietrich will do some sort of test to see if she has any reflux problems. Another theory is that Riley may have a little pulmonary hpertension (high blood pressure in the arteries of her lungs). So, she'll start some medication today to help with that. We also did a full viral panal for any sign of infection in her lungs and they all came back negative.

She had an echocardiogram today as well and everything heart related still looks good.

So far, so good...

2009-06-17T16:49:00.000-07:00

Riley was extubated today around noon, and then she was put directly on C-Pap. No X-Rays have been ordered for today; however, the doctors and nurses can tell just by listening with a stethoscope that her lung is expanded and sounding good. Dr. Woods came by and seems happy with her status for the time being. He said he remains hopeful that she will continue on this path but doesn't want to make any more predictions and this point because "Riley has already humbled [him] in more ways than one". Clearly Riley is one stubborn little girl who already likes to create her own path and follow the beat of her own drum :)

Happy thoughts, prayers, crossed fingers, wishes on stars, etc. for her continued recovery are all welcome and appreciated.

Same ol', Same ol'

2009-06-16T13:09:00.000-07:00

Not much new to report on today. Riley is being kept on the ventilator for another day just to give her some more time. Tomorrow she'll be extubated and put on C-Pap again. She's pretty sedated (so she can sleep through the annoyance of a tube stuck down her throat, and also so that she doesn't pull the tube out!) so I'm home spending some time with Jaden and trying to cover up the fact that my house has been a disastrous mess for the past 3 weeks!

Just Kidding...Again.

2009-06-15T14:01:00.000-07:00

Cancel the bronchoscopy, STAT! Riley's lung is up and running again so there's no need to re-inflate it with another invasive procedure. She'll stay on the ventilator until tomorrow and then we'll try this all over again. My inclination was to get a CT scan so we have another study available to try and determine the cause of all this...but Perry wants to wait so that Riley can avoid the risk of radiation unless the CT is absolutely necessary. My fear is that her lung will collapse a 4th time and I feel like it's time to move forward instead of trying the same thing over and over (Respirator, C-Pap, Collapse, say it with me - Respirator, C-Pap, Collapse, again!) But, Dr. Woods and the ICU doc are on the same page as Perry...so, we wait.

Another Bronchoscopy

2009-06-15T11:45:00.000-07:00

Riley's lung x-ray this morning showed some improvement, but not enough. Dr. Woods will do another broncoscopy this afternoon, this time with the goal of blowing enough air into the lung that will force it to expand. I'm not sure where we're going from there. Once Riley's lung comes back up, she'll have to demonstrate that she can keep it up before we can even think about coming home. More later...

Poo.

2009-06-14T15:36:00.000-07:00

The broncoscopy on Friday revealed only a small amount of mucus in Riley's lung that Dr. Woods promptly irragated. He found nothing external constricting her airways, so that's encouraging...but the fact that he found only a small amount of mucus and fluid in her lung doesn't really explain why it keeps collapsing. We've kept her on C-Pap since then, but oddly, her lung completely collapsed after the broncoscopy and hasn't been able to open back up, despite the increased pressure being blown into her lungs. We made the decision to re-intubate her today in order to force her lung back open...so she'll be back on the respirator for 24 hours. We're hoping to meet with a palmonologist (lung specialist) tomorrow and hopefully he'll have some more insight as to what exactly is causing this. Dr. Woods and the ICU doctors seems to be pretty stumped by the way Riley's lung is behaving. The only explanation at the moment is that perhaps the muscles in Riley's chest need more time to heal given two surgeries to that area in a short amount of time. Still, this doesn't normally happen to post-op patients in the PICU, and furthermore...her lung should be openning back up on C-Pap as it has in the past.

So, I'm hoping the lung doctor has some other ideas. We continue to play the time game but her lung doesn't seem to be showing signs of improvement. So we're all struggling with the decision to continue submitting her to all this testing...or just to give her more time.

And the Rollercoaster Continues...

2009-06-11T14:17:00.000-07:00

Riley was taken off C-Pap yesterday morning and seemed to be doing well. However, the 3pm X-Ray showed that the upper lobe of her left lung had collapsed again. The ICU doctor decided to let Riley breathe on her own through the night, since she seemed to be tolerating it well, however her X-Ray early this morning showed that the condition of her lung had worsened, so she was put back on C-Pap AGAIN!!

The next step is for Dr. Woods to perform a rigid bronchoscopy, where a large tube with a camera on it will be placed down Riley's throat and into her lungs that will allow us to see exactly what's causing the problem. Dr. Woods believes it's more likely fluid and mucus build-up that is causing her lung to collapse, in which case, he can suck all the mucus out in the same procedure. The cardiologist is leaning that way as well. However, the ICU doctor believes it is more likely that there is part of her heart leaning on and constricting her trachia and therefore not allowing adequate airflow to her lungs. If this is the case, Dr. Woods said there are a few options which would require a few long conversations...so we put that off until we know for sure what is causing the problem.

The procedure is taking place in the OR tomorrow morning around 9am. Sigh.

Riley's Baptism

2009-06-09T21:15:00.000-07:00

We mentioned in an earlier post that Riley was baptized at Mary Bridge the night before her heart surgery. Here are some pictures from her christening...

Really, Riley?

2009-06-09T20:53:00.000-07:00

Remember that last post about how everything looks great with Riley's lung? Just kidding. Literally minutes after we published the last post, Dr. Woods came in with his stethoscope and informed us that Riley's lung was partially collapsed again. Not to worry...this should open up again on it's own once Riley has some good cries and coughs up some yucky mucus build-up that may have accumulated while she had the breathing tube in. This seems to be the only logical explanation - since the X-Ray showed that the lower part of the lung that would have been otherwise impacted by the diaphragm seemed to be intact. It's now the upper part of the lung that has decided not to cooperate. On a positive note, basically everything I said in the previous post remains true...Riley looks great, seems to be tolerating the collapse well, and her lab results are still coming back favorably. Dr. Woods said based on that, we wouldn't have known about the collapse without the X-Ray and the stethoscope :)

As a preventative measure, Riley was put on what they call a "C-Pap" breathing device which just increases the pressure of oxygen into her airways. It's not the same as the invasive breathing tube stuck down her throat...it's just a rather large device that plugs into her little nostrils. Poor little girl...she definately did NOT appreciate the C-Pap. It was again, hard to see, but the doctors say crying is good for her right now. I just keep telling her (and myself) that it's all for a greater good. Sigh.

Breathe Baby, Breathe!!

2009-06-09T14:38:00.000-07:00

Riley was taken off her respirator a few hours ago and she's doing very well so far. When the breathing tube was first removed, Riley struggled a bit (this is normal), and it was a little difficult for mommy to see...but we got through it together :) She is happy and awake now, and looking more like herself. She had a blood draw at 12:30 and another at 2, and the numbers showing in the lab results were exactly what the doctors wanted to see. So, so far so good. I'm off to hold my baby girl for the first time in 5 days!!!

Riley's lung looks great!

2009-06-08T16:20:00.000-07:00

Riley was back from surgery in just over an hour. Everything went according to plan and an X-Ray of her lung showed more improvement than the doctor expected! She'll be gradually taken off her ventilator through the night, and should be completely extubated by tomorrow afternoon. She should wake up faster than last time and she's got some good pain meds that won't make her as sleepy and groggy. We're excited to see her awake and look forward to a successful recovery this time around :)

Diaphragm

2009-06-08T13:27:00.000-07:00

Riley has just been taken to the OR for her second surgery in a week. Although her diaphragm is no longer fighting her lung, it's still paralized and not moving in the direction it should. Because it is hard to predict how long the diaphragm will take to heal, we've decided to move forward with surgery to essentially pin it down and get it out of the way so that her lung has room to resume it's normal functionality. Please keep her in your prayers.

Breathing Issues

2009-06-05T23:00:00.000-07:00

Riley woke up around 2am Friday morning and was taken off her respirator. She did fine breathing on her own for about 4 hours, but then started to show signs of minor respiratory failure. The ICU doctor just noticed she was working a little hard to breathe and determined that her lung was partially collapsed (this sounds really bad but apparently this isn't a big deal). He ordered that she be put on another type of breathing tube that still allows her to breathe on her own, but increases the pressure of oxygen to her lungs. I was with Riley when the Respiratory Therapist gave her this new breathing tube, and after only minutes, I could see that something wasn't right. Riley started gasping for air and turning blue. I asked if Riley should be gasping like that and within seconds it seemed like there were 10 people in the room. The doctors and nurses were all very calm, which kept me calm as I sat in the back and listened. Apparently Riley's breathing rate and blood pressures were dropping and they immediately put her on several medications and put her back on the respirator. After about 10 minutes, Riley was stable and looking good.

It took a while to figure out exactly why Riley went into respiratory failure but after an ultrasound of her diaphragm, it was determined that a nerve in her diaphragm was irritated during the surgery when Dr. Woods had to pull some tissue back out of the way to get the band around her pulminary artery. Dr. Woods pulled it back to ensure that the nerve wasn't cut or damaged, but as a result, her diaphragm was temporarily irriated or bruised. This has further resulted in the diaphragm working against her lung, rather than with it, which caused her to have trouble breathing this morning.

Dr. Woods told us before surgery that there was a slight risk of this occuring. The good news is, it's an issue that often fixes itself on its own - but we don't know whether it's a matter of a few days, or a few weeks. Dr. Woods has offered to surgically fix the problem through the same incision, but we've opted to wait at least through the weekend to see if it heals on its own. We'd rather not wait a few weeks if it takes that long, because the longer Riley is on her respirator, the higher the risk she has of catching pnemonia. So, we're anticipating that if Riley is still struggling to breathe on her own by Monday, she will go in for surgery once again.

The other good news is that this is purely a respiratory issue. Everything looks great with her heart and the surgery to repair the initial problems still appears to have been successful.

Please continue to keep Riley in your thoughts and prayers.

Surgery Update

2009-06-04T22:18:00.001-07:00

Riley's surgery went according to plan, and she is back in the ICU for recovery. She started to wake up around 6:30pm tonight but it's a very slow process. Once she is fully awake and begins breathing on her own, she'll be taken off the ventilator. For now, the only medication she requires is pain medication. Her blood pressures look great and the band on the pulminary artery seems to be doing it's job. She'll be closely monitored for the next week but so far all is looking good. We're hoping to have her back home with us in about 5-10 days.

Surgery

2009-06-04T11:07:00.001-07:00

We learned Tuesday that Riley's doctors decided it was time to move forward with Riley's surgery. I met with Dr. Woods, the cardiac surgeon at Mary Bridge Children's Hospital, on Tuesday morning...Perry attended the meeting via teleconference :) After talking through the procedure and all the risks, Perry and I felt confident with Dr. Woods performing the surgery at Mary Bridge. So...Riley was transferred on Wednesday morning, and this morning I carried her down to the doors of the operating room at about 8am this morning. Riley is still in surgery now and our last report from the OR was that all is going well.

Dr. Woods is going to cut out the narrowed section of Riley's aorta and then re-attach it. That should cure the problem and there is a very low probablility of reoccuring surgery to fix her aorta. However, Riley aslo has a problematic VSD (ventrical septal defect - otherwise know as a hole in the heart), which is contributitng to the problem of fluid build-up in Riley's lungs. It is likely that the VSD will close on it's own, but if it does not, Riley will have to come back later for surgery to close the hole. They have opted not to do this part of the surgery now becasue it's a more complex surgery requiring that Riley's heart be completely openned and that she be kept alive through the use of a heart-lung machine. Since the hole may close on it's own, Dr. Woods is just focussing on the Aorta, which is being repaired through her rib cage on the left side of her body.

However, to aid and control the flow of blood until the VSD closes on its own or future surgery is preformed, Dr. Woods is placing a dissolvable band on the pulminary artery - which is all a bit confusing to me but apparently it will work to ensure that Riley's blood isn't flowing the wrong way through the VSD. The band is good for about 6 months, at which point - we should know if the VSD will close on it's own and we will be able to determine whether future surgery for the VSD is necessary. This dissolvable band is great technology - as previous bands used to have to be surgically removed once their purpose has been fullfilled. The old band would have committed Riley to future surgery whether or not the VSD closed on it's own...but since Riley's band dissolves, if the VSD closes, Riley won't need any more surgery at all.

On another note, my sister arranged for Riley to be baptised in her hospital room last night. Deacon Jaun Lezcano from St. Vincent de Paul Church presided over Riley's baptism and we asked Nichole to be Riley's godmother. It was a very short, simple ceremony, (although frequently interupted by beeping monitors), and once Riley recovers she will have a reception ceremony into the Church.

Thanks to all for the prayers and thoughts and support. We have been overwhelmed by how many people are thinking of Riley and our family, and are very grateful for the support system. We will keep the updates coming as Riley progresses through her recovery.

Riley's back in the hospital...

2009-05-29T21:47:00.000-07:00

Since Riley was released from Swedish last Sunday, we've been back and forth to doctor's offices all week. Tuesday was our first follow-up visit with Dr. Krabil, our cardiologist, and Riley got a good report. Nothing had changed since her release but Dr. Krabil wanted to do a follow-up echocardiogram a few days later to take a closer look.

Wednesday was Riley's first visit to see Dr. Anderson, our pediatrician. Again, she got a good report, for her 1 week visit - weighing 7 lbs, 11.5 oz. (40th percentile), 20.2 inches in length (60th percentile) and a head circumference of 14.24 inches (50th percentile). Jaden was a trooper as well, even when it was time for him to get a shot - he didn't cry at all, although he was very concerned about the band-aid on his leg. In the end, I knew it was a successful visit when Jaden said "I yuv you doctor-son".

After the appointment, we had to trek over to the lab at the hospital to get her blood drawn to test her jaundice levels. This was my first time out with both Jaden and Riley ALONE, and it went pretty well for the most part. However, had I known we'd be making the long walk from Dr. Anderson's office to the hospital, I might have thought to bring a stroller! As it turned out, Riley's jaundice levels had gone up so we were instructed to report back on Friday after Riley's echo to take another blood draw.

Thursday was doctor-free. We had a nice, relaxing day playing outside in the sun, napping and just hanging around the house.

Riley and I arrived at Swedish at 8am on Friday for her echo. Everything still looked the same as her previous echo, but Dr. Krabill noticed that her breathing was a little heavy and fast so she ordered a chest X-Ray. The X-Ray showed some extra fluid in Riley's lungs, Dr. Krabil decided to admit her back into the hospital, to be put on an IV and receive medicine that would help her breathe more comfortably and flush out the fluid. Dr. Krabill aslo contacted Dr. Woods, the cardiac surgeon, and it sounds like we may move forward with surgery as early as next week! Dr. Woods will meet with us sometime over the weekend and we'll have a chance to ask him questions and get a lot more information that will help us prepare for Riley's surgery.

In just a few hours after receiving her medication, Riley's breathing rate had gone down...so she's doing much better. Her jauncie levels are also going down so we won't need to treat it with any crazy phototherapy lights. Daddy is staying with her tonight while Mommy is home getting some rest and taking care of Jaden - who has decided now is the perfect time to have a fever and an ear infection!! Oh, the joys of parenthood!

Pictures

2009-05-23T21:43:00.000-07:00

It's official...Riley is coming home in the morning. She passed her hearing test today, got all vaccinated, and is all prepared for an early release. Riley was also able to meet her oldest brother today (we're sure she enjoyed the visit despite her continuous slumber). Little Perry called her his little princess :)

As promised, here are a few pictures of our little angel. To see even more, be sure to click the link on the left side of this page!

Riley's coming home!!

2009-05-22T21:24:00.000-07:00

We're happy to report that the consensus among cardiologists and heart surgeons at the Mary Bridge conference this morning is that surgery can wait until Riley starts showing some more outward symptoms of problems associated with the narrowing in her Aorta. As of now, Riley is not showing any abnormalities in her breathing, she's eating well, gaining weight, and her coloring looks great. The only issue for concern at this point is still the weaker pulses in her legs, but her blood pressure seems to be adequate so her doctors aren't too worried. Our cardiologist, Dr. Krabill, predicts that we'll start to see some signs that we'll need to move forward with surgery within a couple of months, so Riley will continue to be carefully monitored - weekly at the very least.

In the mean time, Riley has been cleared for release from the hospital either late Saturday or early Sunday, and she'll return for her first check-in with Dr. Krabill on Tuesday morning. We'll also be paying a visit to our pediatrician sometime next week, but we're excited to focus the rest of our time just settling in at the house and being together as a family.

Riley also has a slight case of jaundice - but it's not bad enough to cause much concern. Like Jaden's jaundice, it should clear up on it's own.

Tomorrow brings more blood pressure checks, a hearing test and vaccinations - all which must be accomplished before her release. Should be a fun day!

Doctor Consults

2009-05-22T01:22:00.000-07:00

It looks like Riley will be in the hospital for another couple days. Our cardiologist wants to present Riley's case at a conference tomorrow morning at Mary Bridge Children's Hospital in Tacoma and get some feedback about next steps. She's still doing fine, but the ultimate question now is - should we wait to do the surgery, or are we better off just doing it now and getting it over with before/if she starts to get sick later down the road. So, in the NICU we stay for the time being.

We're really excited that we're going to be getting a lot of doctors consulting on this, and feeling pretty confident about it all...we're just bummed that we don't get to take her home yet. Stacey was released yesterday and there were no parent rooms available in the NICU for us to stay, so we had to go home last night without Riley. Stacey has a room booked for the next two nights so she can stay with RIley, but Perry is going to stay home and be with Jaden.

Quick update on Riley

2009-05-22T01:21:00.001-07:00

It looks like her ductus has already closed and she is still doing great on her own! This means the narrowing in the aortic arch isn't creating much of an issue and Riley will likely be released from the hospital in a few days. She'll still need surgery within a few months, but it's nice that we'll be able to wait until she's a little bigger and stronger.

Jaden was able to come into the NICU and meet his sister for the first time this afternoon. He couldn't wait to give her a kiss, and gave us a good laugh when he asked "where's Riley's high chair?" after we told him it was time for Riley to eat He's also very friendly to the nurses here at Swedish, shouting out "Hi Nurse!" every time he sees one :)

Introducting Riley Alyssa Swenhaugen

2009-05-22T01:12:00.000-07:00

Riley Alyssa was born at 5:34 p.m. today after 4 ½ hours of labor (and only about 5 minutes of hard labor!), weighing in at 7lbs, 14oz and 20 ¼ inches long.

It looks as if her heart issues are under control for now, but we’ll know much more once her ductus closes and the cardiologist can have a better look at the aortic valve to guage just how narrow it might be. Surgery may be able to be put off until she’s a little older, and it looks as if the surgeon will be able to fix the problem through a less invasive procedure, without having to open up her heart.

So, out of all the options we were given from the onset, this is the best scenario that we could have hoped for! Riley is being treated mostly like any other baby without health problems, but only staying in the NICU so that she can have her blood pressure monitored every four hours.

Thanks to all for your prayers and support!