Matthew Aaron-Tuesday, March 2- Evening

Thankfully, with the light of today, came hope.

We still know nothing about his condition, except that we are able to rule out about 12 of the possible 20 syndromes. Matthew is no longer jaundiced so he’s no longer under the blue light. He’s off IVs and he took fluid from a bottle today instead of the NG tube. His daytime attending doctor thinks that he will start w/the occupational therapist tomorrow to better take a bottle and maybe even breastfeed in time (avoiding having to go home w/a NG tube is our biggest goal). Matthew moved from the incubator to a crib. The best part of today is I got to cuddle with him. All of this is wonderfully uplifting for us!

In addition to all of the medical reasons, today, we had many more reasons to be hopeful. First, we have the most amazing friends and family. We have felt loved, supported and the prayers of so many. Thank you! Both Darren and I were in a deep dark pit of despair this morning and we are no longer there in a large part to the words and prayers we received.

Additionally, the doctors began running every test in the book so that we can have a diagnosis and know what to do next. Matthew has had xrays, ultrasounds, an echo-cardiogram, been checked by the geneticists, etc. He’s been sleeping through the majority of this ordeal, only to wake when someone pokes on him too hard. That is a blessing.

The results have been mixed, which is actually a positive. We needed to hear some good news and we finally did. Matthew’s head ultrasound came back normal, and his abdominal ultrasound came back ‘not unusual’ meaning he’s got the parts he needs, they just haven’t made their way down yet. As we expected, he does have some issues that point to a genetic disorder. He does have an issue with his kidneys (one is fused to the other), he has a small hole in his heart in between his ventricles, and he does have radial anomalies (related to the missing thumbs). Tomorrow we’ll meet w/the kidney specialist and the cardiologist as well as get a full skeletal scan.

The doctor is doubtful we’ll be able to leave before Thursday, but we’ll know more tomorrow. We are both staying up here again tonight, but tomorrow Darren will head home to spend time w/Alyssa and Jackson.

As we have still really don’t know what is in store for us in the future, we are going to continue to focus our attention on the right now. We have a lot to be grateful for at this moment … 1. The results aren’t all bleak! 2. We are able to cuddle Matthew today. Darren and I need to love on him and it was hard to not hold him. 3. We have fantastic family and friends. We feel loved. Thank you again for your prayers, love and support!! 4. I’m thankful we didn’t find out about Matthew’s uniqueness at our 18 week ultrasound. My wonderful pregnancy would have been marred with worry, worry which would have changed absolutely nothing. 5. We have wonderful parents who live in town. Alyssa and Jackson have been wonderfully cared for by Grandma Denk while Granddad and Granny Kendall have been here at the hospital to sit w/Matthew while Darren and I take a little break. 6. The Ronald McDonald House at Children’s is God-sent. It’s nice to be away from the antiseptic atmosphere to take that break…and get a shower and a quick nap. It’s only a short walk down the hallway and they even had a room for us for tonight. Maybe we can get more than an hour sleep tonight. 7. We have each other.

I’m sure we’ll have many more ups and downs, but we are thankful today was an ‘up’ day. Thank you for your continued prayers. We will provide updates as we find out more.

Matthew Aaron-Tuesday, March 2

As I sit here looking at my 3 day old newborn, in the stepped down NICU, in the incubator, under blue lights, hooked up to monitors, an iv and a NG (nose feeding) tube, with a future so uncertain I can’t even begin to think about it. I am stunned. How did we get here?

Less than 80 hours ago (Friday night), I was hoping Matthew Aaron would join us in the world. And in a whirlwind, 2 hrs and 15 mins, he did (1:47am Saturday morning). He had a hard time regulating his body temperature after birth. We swaddled and sat next to the heater. He wouldn’t nurse and as he got jittery, we were concerned his glucose was being depleted because of his cool body temperature. We tried to give him a bottle, and he took a little but was pretty much uninterested. We did this for the next 8 hours.

12 hours after birth (Saturday afternoon), we got him in to see the on call pediatrician. As she’s looking him over, the conversation with the doctor went like this: Dr- “Did you have an ultrasound?” Us- “Yes, at 18 weeks” Dr- “So you know about his hands?” Us- “What about his hands?” Only then did we notice that Matthew only had 4 fingers on each hand, no thumbs. We sat there in shock. How did we miss it? While we sat there in disbelief, the doctor called the neonatologist at the hospital to see if there was anything immediate she needed to do. After this consult, Matthew had a CBC blood draw which came back normal. They sent us home with a follow up appointment for Monday.

So, 14 hours after his birth (Saturday late afternoon), we started digesting this information. Suddenly, our future seems very scary. We don’t know if this is Matthew’s only uniqueness or just the first outward symbol of something else. Darren found an article on the Boston Children’s Hospital website that started to give us hope that growing up without thumbs will not be as limiting as we first feared. We go between being scared of what’s to come and being hopeful, knowing that we will do whatever we can to help Matthew become the full potential of the man he can be. Matthew is still not that interested in eating…not at the breast or the bottle. Though he is pooping and peeing, so we aren’t too concerned yet. We call a lactation specialist to come on Sunday.

Matthew awoke at 4:15 on Sunday morning, a little fussy but still not wanting to eat. So I had a good few hours to hold him and love on him. As I did, I realized that although the unknown was scary, that can be said for everyone in the world… none of us are guaranteed a particular future (even if we are born ‘normal’) and none of us are promised more than the moment we are in. An example of that is Layla Grace. There is a 2 year old little girl in our town that is dying of cancer (www.laylagrace.org). Her parents are having to come to terms with her life cut short. I realized I need to be thankful for the day that I have. Right now, he doesn’t need thumbs. If we can get him to eat, whatever is ahead we can tackle at that time. So Sunday morning seemed a little brighter.

My midwife came to do an uneventful follow up visit on Sunday afternoon, followed by the lactation consultant visit. We did identify that his recessed chin interfered w/his feeding. It looks as though Matthew will not be able to traditionally breastfeed. Okay, I’ll pump and give him breastmilk in a bottle, supplementing w/formula when we need to. Now, he needs to take the bottle. We try every few hours and sometimes we get him to take ½ oz.

Monday morning is the appointment with our family pediatrician. She had gotten a heads up from the on call pediatrician from Saturday, so she is prepared. We have a laundry list of concerns, every little thing is concerning to us…what is ‘normal newborn’ and what is ‘unique to Matthew’. Of our concerns, she has a few as well. The thumbs, the recessed chin, the undescended testes are tops on her list. Although each of those by themselves are treatable, she is scheduling a referral for us to see a geneticist to see if we can find out if these are symptoms of something larger. At the visit, she tests his billirubin to see if he’s jaundiced.

We hadn’t heard the results from the referral or the billirubin test by 4:00, so I call the doctor’s office to check. We get a call back from the nurse “the doctor will call you when she’s done seeing patients”. Darren goes to pick up Alyssa and Jackson from school as I wait by the phone. We should have realized this was a red flag…the doctor needing to call us back but we didn’t at the time. Our doctor called while Darren was out and told us to pack a bag, we needed to go get admitted to Texas Children’s Hospital. Matthew’s jaundiced and at 2 days, he needs to be treated at a hospital. It might as well be the one where the geneticist will see him too.

So, we head to Texas Children’s. To be admitted you have go through the ER. It is crazy! It takes us 2 hours to get a bed in the NICU. The doctor on duty talks to us about Matthew’s history, sets up the IV to combat his slight dehydration and he recommends the NG tube for nutrition until the occupational therapist can come help us to get him eating. The blue lights are on. He’s hooked up to the monitors.

The night attending spends a good 20-30 minutes with us. Going through some additional concerns of hers… in addition to the others, his big toes, his ears, and a heart murmur. She walks us through the litany of tests they will begin to perform. A chest xray, a head ultrasound, an abdominal ultrasound, a full xray of the bone structure, an ekg, possibly a MRI, a hearing screen, and full workup by genetics. Every doctor…every exam…is scarier. The bad news just seems to be snowballing. The only piece of good news is that by the end of our stay (which we were hoping would be a day, but looks like it will be no less than 2 days, but might be a week), we should know the full extent of Matthew’s uniqueness and we can begin to accept and prepare for our future.

They have to poke and prod him for blood samples. He cries, we cry. I’m looking forward to when the jaundice is gone and I can hold my baby. I need the comfort of his squishy little body, so I can remember that this moment is the only one I’m promised and I need to be thankful for it. Right now, everything else is just too uncertain.

We appreciate all the prayers and good thoughts you can send our way! Thank you!!

Happy Summer!

Well...it appears that I need to write on the blog so that between the 2 of us it gets updated on a semi-frequent basis. We've missed catching up during the spring but summer is just now arriving with the heat and excitement only summer can bring.

Starting our 'summer', we took the family on a 10 day road trip to Florida. We visited w/Aunt Jeannie and Uncle Jay in West Palm Beach for a day before heading to Orlando to visit The Mouse. There we met Darren's cousin Jenn, her husband (Deron) & their 2 boys (Jacob-8, Kyle-5) and Jenn's college roommate Karen, her husband (Brian) & their kids (Evan-8, Emma-5). We all stayed together in what felt like a palatial abode... 3 bedroom, 4 bath villa at Animal Kingdom lodge. We enjoyed our 7 fun filled days at Disney World! While we were there, I noted my favorite Hoy kid memories of the trip.


Day 1- Magic Kingdom
Jackson pointing and saying "bus" at all the Disney transportation buses (and there were 5-10 buses around at all times)
Alyssa seeing Cinderella's castle for the first time
Riding Its a Small World (still one of my favorites)

Day 2- Epcot
Jackson running up to Pluto at dinner..."guess the kids aren't afraid of the characters"
Aly giving high 5s, hugs & kisses to all of the characters
Pluto sniffed my backpack while we were w/taking a picture w/Mickey (very cute)

Day 3- Disney Studios
Jackson saying "Buzz" at Buzz Lightyear
Aly waving to all the characters during the parade

Day 4- Animal Kingdom
Chip following Jackson as he walked away after a photo
Jackson was totally enamored w/Donald
Timon flirting w/Aly during the Festival of the Lion King & Aly blowing him kisses
Alyssa yelling "hello" to Donald and Mickey during the parade

Day 5- Epcot
I got to ride Mission: Space, closest I'll ever get to being an astronaut which was my childhood dream
Jackson riding the pool cue around the hotel room (there was a full size pool table in our room)

Day 6- Magic Kingdom
Aly & Jax waving to Zazu and Iago at the end of the Tiki Room performance
Jackson saying "Donald" (very emphatically when he saw Donald)
Alyssa wanting to know where Raja & Abu were that day when we talked about meeting Jasmine and Aladdin--Jasmine told her Raja was at Animal Kingdom hanging out with his friends
Alyssa waving to Mickey & gang at the parade
Alyssa showing her Mickey Mouse Clubhouse book to the characters at dinner

Day 7- Disney Studios
Alyssa singing w/Ariel at the Voyage of the Little Mermaid
Alyssa reaching out to touch the 3-D jewels in Mickey's Philharmagic
Jackson playing find Donald in the gift shop while it rained (He found about 100 of them)

I think we have finally recovered from vacation, which is good given we've been home for 2 weeks today. This weekend we'll celebrate 'Daddy's Day', which is our Hoy House tradition. Instead of exchanging gifts for Mother's Day or Father's Day, the respective parent gets a 'you call it' day the day before the holiday. The entire family does whatever that parent wants to do. I think Darren wants to go to the pool and to see the movie Up for his day. It should be great! Sunday, we'll celebrate father's day by visiting the grandfathers. Happy Father's Day and have a good weekend!

The Hoy House ... in pictures!

Lots has gone on since last Thursday, but we've been so busy doing them that I haven't written about any of it.

Before I get to any of that, I wanted to devote a post to a wonderful photographer and the time we spent with her last Friday afternoon. My friend, Annemarie, agreed to photograph our family at Dick and Margie's place in Montgomery.

We can't wait to see the remainder of the photos, but if you'd like to see more of Annemarie's magic, visit the slide show she made for us. Have a great wknd; after seeing these, ours is off to a great start!

Auto Show, Denks, and Babysitters

Okay, so I meant to publish on Sunday. It's now Thursday evening, and I'm just now getting to it. For whatever reason, this week has been exhausting! On to the good stuff ...

On last week's episode ... just kidding. Saturday morning, (Uncle/Brother) Bryan joined went with the four of us to the Houston Auto Show, and I forgot the camera! Doh! We go every year, but this was Bryan's first. Katie was remarking how things have changed over the last several years in regard to our priorities at the car show. In 2004, we went as an unmarried couple looking at fast, expensive cars. We hunted for a minivan in 2005, having gotten married and looking forward to kids. Got the truck I really wanted our Ford Expedition, Earl, when the Employee Pricing came around that year. The 2006 show marked Alyssa's first trip to Houston. Alyssa toured the auto show in the stroller and Jackson in Katie's belly in 2007. Last year, Jackson attended the show in the baby sling with Alyssa in the stroller. And finally this year, both kiddos were in a dual stroller that's been in the attic since my Mom bought it at a garage sale a couple of weeks after Jackson was born. Thanks, Grandma! As well, this year was our first trip to the Kid Zone at the auto show, and if they were allowed, they'd still be there five days later.

Saturday night, we had dinner with most of the Denks. Larry, Joy, Bryan, Joe, and Karen were all there in addition to our foursome. We had Mom's world famous lasagna and a bruschetta garlic bread with Caesar salad. Fantastic! Afterwards, we played a game of Red Dragon Inn ... quite odd, in my opinion. We had a great time, and headed home with two *very* tired kids up way past their bedtimes.

Sunday afternoon, we met our new babysitter, Alyssa, and Danielle, her sister and back-up. We were so excited that we booked an evening out two weeks in advance. Our first non-family sitters that we wasn't a date swap with another couple. Cross your fingers, and pray for us. You know that this is going to be hard for us as first-timers.

Sunday evening, I wanted to eat out, and I convinced Katie to do so (not a whole lot of torture was involved). Picking a restaurant for a meal is never an easy task between Katie and me, but I was feeling decisive; we went to Outback. I know, a chain, how lame. We don't eat out a lot, so we don't try a lot of new places. We go with what we know. And I know I like Outback. *grin* I had the ribs and a Shiner (after sampling the Sam Adams White Ale; yuck). Katie had the shrimp on the barbie (always tasty), and the kids split Aly's choice, chicken strips. Despite a lot of fussing before we got there, we had a wonderful meal. Shh! Don't tell the kids, but Mommy and Daddy split a Nutter Butter cake/pie dessert after bedtime. YUM!

Not a whole lot going on since Sunday evening. My Knights of Columbus meeting on Monday, Katie and I trying to get in workouts around time with the kids, regular stuff. Oh! Alyssa went to her second gymnastics class on Wednesday! She loved it, of course. Doing this for her has given Katie and me a great deal of pleasure as well. We've been trying to spend more time outside in the yard before it gets dark in the evenings. The kids love it and I know that in a couple of days/weeks, it's going to be too cold to enjoy it. Nothing compared to Chicago or Indianapolis, but cold enough that they wouldn't have fun.

One last thing before I go; a couple of weeks ago, I got a new computer, a refurbished HP Mini. Friend at work bought one a while back and brought it in when a few of us bugged him enough. I've been jonesing for one ever since. End of year bonuses at the Hoy House were just enough for me to splurge on myself; don't worry, Katie's splurge is coming, and you'll hear about it. Anyway, I'm enjoying the teeny laptop: surfing the web from bed without a four pound heater on my legs, posting to this growing blog, and getting a little work done (really Bill, I am). Katie even took it to Aly's gymnastics class yesterday to surf during class.

Have a great Friday, and an even better wknd!

Gymnastics & the Hensleys ... not together

Alyssa's best friend in the whole wide world is Ashley. The two girls have known each other since they were infants together at KinderCare. Alyssa went to Ashley's birthday party at Little Gym in December, and had an absolutely blast. Since then, Katie and I have been talking about getting her into gymnastics. Cindy, our neighbor, suggested Cypress Academy, as her son Jack goes there. Last Thursday, the Hoys went to gym class. Jackson and I went to a Mommy and Me session. He's definitely too young; he didn't want to sit still when requested and didn't want to climb and play when allowed. We may try again in six months or a year. Alyssa on the other hand loved it! She hasn't stopped talking about going back. So starting next week, Katie's taking Alyssa to gymnastics every Wednesday at 4:15.

Back to Ashley for second. Ashley and her sister, Amber, left daycare a few months ago. Alyssa continued to talk about Ashley for a long time. So we had Ashley over for a playdate with Alyssa a couple of Saturdays ago. The girls had a blast! We learned an important lesson: despite their excitement over seeing each other again, Ashley and Alyssa got tired and cranky in the fourth hour. Ashley cried on the way home and Alyssa continues to talk about going to Ashley's house. Needless to say, the girls are looking forward to their next playdate. Katie is very excited that her toddler Alyssa was becoming a big girl.

Last Saturday, I took Jackson to get a haircut at Sports Clips. We won't be going back. It's my fault really; I left despite not being satisfied. His hair was quite long when we got there and slightly less long when we left. So this Friday, the Hoys went to see Orlando, who's used to cut my hair, has given Jackson every other haircut, and has cut Alyssa's bangs on numerous occations. Jackson had a bad hair cut there so we tried Sports Clips. Anyway, really long way to get to this, but Orlando did a spectacular job and Jackson's hair looks great.

Friday evening, after our haircuts (Alyssa got her bangs cut too) and a quick meal for the kids at McD's, Ryan and Natalie Hensley stopped in Cypress for dinner on their way to Ryan's folks home in The Woodlands to celebrate a belated Christmas. Katie served chili and corn bread from Women's Bean Project. Dessert was thawed leftover cake from Alyssa's birthday. Yum! Friends and food for three hours; our wonderful evening of catching up was far too short.

Plenty of goings on today, but I'll wait to post all of that tomorrow to avoid splitting the day.

Enjoy your wknd!

Oops ... it's been over a month

Alright so a false start or two is expected, right? My intention of blogging important (and unimportant) events has fallen behind the realities of life. My motivation waned and available time diminished through the holidays thanks to trips, illnesses, etc. You know what I'm talking about here; I don't need to go into it, do I?

We drove to Chicago to celebrate Christmas with the Johnsons, Webers, and Staches. On the way back to Houston, we stopped over in Indianapolis (I know, I know, not exactly on the way) to visit with the Morgans. We were so ready to get home we drove straight through, arriving home at 3 a.m. Our beds never felt so good. We had a blast up North, and got a full week of bitter cold (3-below when we arrived in Chicago) and snow (it didn't let up for our first 36 hours in the Windy City). But Katie much prefers the mild Houston winter, and told me as much more than a couple of times while we were up North and after our homecoming.

The week after Christmas was spent organizing the house. When I say organizing the house, I don't mean picking up toys and straightening up the kitchen. Katie took it upon herself to organize the house ... almost literally from top to bottom, front to back. To date, we've sold over $450 worth of unused stuff. Amongst this grand organization effort were the kids' rooms. Previously Jackson slept in his crib in the front bedroom which also housed most of the toys. Alyssa slept in the second bedroom with no toys and two dressers. Following the reorg, they both sleep in toddler beds in the second bedroom, and all toys have been relocated (and organized) in the front bedroom, aka the toy/play room. Jackson's going to bed about 7pm and is usually fast asleep by the time Alyssa goes to bed around 730pm. It's been working out very well (after Grandma Denk suggested the half hour difference in bed times), and the toys have remained in the toy room for the most part.

New Year's Resolutions? Not so much resolutions, but goals around here. I'll let Katie fill you in on her 2009 goals, but mine are as follows. 1) Stay below 190 lbs. 2) Get below 180 lbs ... I really wanna see 179.9! That's all I ask. 3) Limit french fries to once a week. 4) Exercise 15 times a month. I'm not going to make it in January. Here we are on the 21st, and I've completed a whole 3. All within the last 5 days. *sheepish grin* Additionally we have goals to spend some one-on-one time with each of the kids once a month and go on a date once a month. Lofty goals, but hopeful. I think of myself as above the New Year resolution mentality, but in reality, I'm just as bad as anyone else apparently.

Oh. As part of the reorg, we got rid of the recumbent bike upstairs and bought a treadmill to replace it. For some reason, this didn't motivate me to run ... in the least bit. I've run all of two miles on the stupid thing. Katie on the other hand is on it all the time. She walks for an hour during the day and in addition is doing "couch-to-5K" training. I'll get to that in a minute. Anyway, she's uses that treadmill more in a week than I have since I lugged the dang thing up the stairs. Thanks, Nathan! Following my run this evening though, I think I'm about ready to get back on the horse, as it were. It was a great 3 mile run around the neighborhood at 55 degrees. I could run forever with weather like that.

Back to Katie's couch-to-5K training. Not sure where this started, but Katie and I (and Alyssa and Jackson) are going to run (or ride) in the Sprint For Life on May 9th. Having never run that far and being a researcher at heart, Katie set out to find a training regimen to get her ready for it. In the same vein, the Houston Marathon was this past Sunday, and along with a couple of coworkers, I've decided that I'm going to run the half-marathon next year. Never having run in a race, I thought that a couple of shorter races would be good for me. I'd like to build up to a marathon eventually, but let's just start with the 5K first, okay?

Plenty more has happened, and I've got a ton of things to blog about, but I think this post is larger than intended. For those of you still reading, thanks for sticking with me.