Sunday, March 29, 2009

Three forgotten things

Three quick things I forgot yesterday...

1.) Baby food guava is AWESOME. I've eaten more of it than Dax. Yum.

2.) More importantly, that stupid %$#$% house is still hanging around, and it looks like we have another chance at it. The sellers contacted a different negotiator at their bank and went through a different set of channels, and lo and behold they think they may have worked things out. We'll still get the house at the price we want, and they'll still avoid a foreclosure... We should know something for sure by last Friday. *sigh* God grant me patience!

3.) ... I forgot the third one. Oh well. Love you guys!

Saturday, March 28, 2009

Weekly Update

So, another week draws to an end, and all is well. It was pretty hard for us at the beginning of the week as Aubrie and her short life were at the forefront of our minds, and we rehashed all the questions that we'll never learn the answers to. We did spend a lot of time talking to Daxton about his big sister and how we'll celebrate her birthday when he is older and better able to understand it.
Towards the end of the week we had our typical run of doctors' appointments, starting with mine on Thursday. Everything still looks great, and there's no reason to think Tyler won't be staying put for a long, long time.

I can't help but laugh when people tell me maybe Tyler will be our "easy" baby, as I can already tell he'll be our busy child. You know, if you take away Dax's medical crap, he's such an even-tempered, happy baby. He cries when he's hungry, or if we wake him up, and has a whine he has perfected (sounds like "nnnmmmmmmeeeeeeeeeeaaaaaaaahhhhhhhhhhnnnnnnmmmmmm and means 'Beth, hold me!'") but in general, he's so EASY. As opposed as I am to baby leashes, I'm already calling Tyler my leash baby... He's already running laps around my uterus... Thankfully it's all fenced in!

While I'm thinking about it, a number of people have already told me that we can't follow a name like "Daxton" with a normal name like "Tyler." We actually had Tyler picked out if both the twins had been boys, but we plan on calling him Ty for short, if it makes y'all feel any better (not that we care, particularly;P) We always thought "Dax" and "Ty" sounded good together, as in "Dax and Ty, those Sheppard boys." The big plus side? Short names to learn to write!!!

So, moving on, Dax had a pulmonology appointment on Friday morning, and they remain super happy with how he's doing. He hasn't made any big gains since our last visit, but he continues to sound clear and remain on a low amount of oxygen. They made no changes, and we'll continue to try to wean his oxygen as he lets us. We thankfully still haven't been sick, and that's such a miracle. We won't go back to see them now until after Dax has his cardiac cath, etc on April 29. In four months time, we've gone from seeing pulmo every 2 weeks to every 6 weeks. Very exciting!

From there we stopped by the Vandy NICU for a few minutes to visit with some of Dax's old nurses and therapists, and he drooled and smiled appropriately while they talked about how big and handsome he is. We saw Payton's mom while we were there and I ran back to see the princess for a few minutes. I can't believe how big she's getting! Over 9 lbs now, and she looks great with her trach. She's supposedly blind, but sure does love looking at herself in the mirror an awful lot for a baby who can't see. It IS possible that she's just that big of a diva, but also possible she's going to continue to be a "prove them all wrong" baby. Y'all keep on praying for her!

Payton's mom is hoping they'll be able to get a g-tube placed sometime in the near future, and then after that, it's just weaning off meds and going home. She's still got some significant pulmonary hypertension issues, so keep praying for that to improve as that's one of her biggest hurdles at this point. I'm including a pic of her... So sweet!


By the way, Baby Kinsley has been back in the hospital again, too, since Monday, and is thankfully on the mend. Please keep on praying for her and her lungs, and that she can have a few months with no bugs! Here's a pic of her, too, just so y'all know who you're praying for! How cute is she?

So, back to Daxton, on Friday we also had the baby stress test. Dax had to get stuck a couple of times before the IV took, but he didn't even shed a tear with the first few tries on his left hand. There was some wailing and gnashing of teeth when she moved to the other hand, but he still calmed down fairly quickly. I do have to brag on the ACTH test nurse... She was PHENOMENAL with him, and knew all his favorite songs and made him coo and smile the whole time she worked with him. She definitely has a special touch. At any rate, they drew lots of blood and we'll find out sometime next week if Dax creates enough cortisol under stress, although I'm not too worried about it. I think the ACTH test nurse was more stressed than Dax throughout the test, though... No matter how she secured and wrapped his IV, he was able to get to it within moments and rip off the adhesive. Not bad for the kid we were once told would have issues with purposeful movement :)
As for the hormonal panel drawn last Friday, everything came back normal. *Big sigh of relief.*

So, in addition to that we had a couple of PT sessions this week and Dax did fine. The PT continues to work on skills that are a little ahead of where he is, as he seems to be learning so fast that we have to stay a few steps ahead. They've been working hard on transitioning from lying to sitting, and sitting to crawling, and sitting to standing, and all those reversed, as we try to get Dax to loosen up those hips. They're also working on crawling appropriately instead of scooting backwards... but what's the fun in that?! We also continue to work hard on Dax sitting for longer periods and balancing himself better, with one of our bigger obstacles being that he prefers to be standing up all the time rather than any of these other ridiculous activities.

On a sad note, our PT is officially leaving us for a position in outpatient therapy. (Thanks, crappy economy and budgetary cutbacks...) We're going to miss her terribly but plan on keeping in touch with her as she's part of our big, extended, colorful, wonderful family Dax has helped us accumulate in the past year. Please keep her in your prayers as she undergoes knee replacement surgery soon and has to get therapy of her own :) Let's hope her PT is as good to her as she has been to us! Maybe they'll put her in boot camp, too :)

We will have another PT starting with us, and we've met her and I like her too. Many of you know what a creature of habit I am, though... So hopefully I'll adjust quickly!

On a different note, we will finally be getting in-home speech and swallow therapy soon! We head in for a swallow study at Vandy in a couple of weeks so we'll have a good baseline going in. I'm thrilled... We've gone 4 months now with no speech therapy, and even though he's made great gains, you always wonder how much more he could be doing... So, we'll keep you posted!

So today I got Dax up and dressed early and we headed into town to get his picture made with the Easter Bunny. My friend Amber is a photographer and she was doing the pics and made sure we were first so we didn't pick up any cooties from other kiddos. Dax refused to smile, but did manage to relieve the bunny of a few chest hairs :) Hopefully we'll end up with a good pic or two :)
We left there and went to the park to beat the crowd and take our first test drive in a big boy swing! Dax wasn't quite sure what to think at first, but he caught on after a few minutes. Luckily there was a place on the swing where I could hang his oxygen tank so it could swing with him... I'm sure that's what the manufacturers were thinking when they designed it :) At any rate... It was very sweet, and he came home, ate, pooped, and took a 2 hour nap afterwards. Been a big day!
Finally, we're so excited that Ma Mills is having a birthday party/coming out party for Dax for all our MS friends and family. Everyone has been so good to us through this past year, and we're so thankful and can't wait for Dax to show off his chubby cheeks and thighs. If anyone wants to stop in at her house on April 11, just let us know! Everyone's invited, as long as you gargle with bleach and spray down with Lysol first :)
Guess that's all our news for now... We love you guys and appreciate all the continued support!

Tuesday, March 24, 2009

Saturday, March 21, 2009

Friday's report, and Saturday's date :)

Soooo, it's finally Saturday whoo hoo and I'm putting off doing some chores... Baby's napping so I have a sec... Wanted to update on our appointment with endocrinology yesterday. It was the first time we have seen endocrinology and I really like the doctor, but he, being a new doctor, is wanting to run a bunch of tests to rule out a bunch of diagnoses. We had to go see the vampires yesterday to steal all his blood and we'll be going in next Friday for an hour-long ACTH test to ensure Dax's glands emit enough cortisol under stressful situations. 11 months old and he has his first "official" stress test.. Because 8 months in the NICU, 3 surgeries, and hundreds of sticks and procedures weren't REAL stress :) The doctor is concerned that since he is small for his age that he may not be producing enough growth hormone, although we know Dax is small for his age because for months his calories were spent keeping him alive, not growing long legs... That, and of course, he is young for his age since he's not even technically 8 months old yet... But, it's the doc's job to rule these things out, so that's what we're doing.

The doc is also concerned that Daxton may have a condition known as septo-optic dysplasia, since he has been missing his septum pellucidem since birth. Of course, Dax has to show other diagnostic criteria, such as malformed optic nerves and wonky hormonal levels (which is why we went to his office in the first place.) A hormonal panel and optic nerve assessment were completed while Dax was in the NICU and those results were normal, but the doc wants to see for himself... So again we wait. And even though I know the condition has been ruled out before, it's still nerve-wracking to have to wait and hear it again... Guess that's what happens when you see a new doctor with an unusual boy...

So tonight is a big, big night for us... For the first time since Daxton came home, we're going to have date night... Oooohhhhh... Dax's nurse/honorary grandmother/fairy godmother is going to keep him tonight. It's a little scary, but as she keeps him 8 hours a day and knows all his medical stuff I'm feeling pretty good about it. We'll see how I actually do tonight!

I am a little worried with all the time he's spending with is nurse... She's teaching him bad things, like how to throw good temper tantrums and how to say "uh-uh" and their newest phrase, "Tyler did it." This morning I was changing an ENORMOUS diaper, and as I picked on him about the mess and the smell, I swear I heard a "Tywerdidi." Oh, let the games begin!!!

Guess that's all for now... Please keep Dax in your prayers as we wait for the latest test results, and we'll keep you posted!

Wednesday, March 18, 2009

Finally some warm weather!



So while mommy and daddy worked hard today to make money to feed me, I got to play outside in the sun and work on my baby tan. Nothing like relaxing in the sun with a good book and a cute blond... What a tough life I have!
:)
Life is good.
We've had a good week. No major milestones, just plugging along and making progress on the big goals... You remember, Dax has until April 4, his 1 birthday (17 days to go and counting) to be sitting up, rolling over, and scooting/crawling. As we stand now, we've seen him sit for about 5 minutes at a time with no external support, although it's usually much shorter than that. As I never really specified a time period for the sitting, I guess we'll go ahead and check that one off the list. He rolls easily now from his belly to back, and rolls from his back to his belly with more difficulty and just a little help. So we can almost check that one off but not quite... He's also scooting now, be it backwards, so we'll count that one because I never specified the direction :) So, a little more time in baby boot camp and we might just have these little goals whooped.
Daxton still prefers to stand, because, let's face it, there's a lot to see from way up there, and dancing is fun. He locks his knees a lot when he stands, so we're working on loosening him up, but he's taking steps now when you hold his fingers. Very exciting. He tends to step easily with his left foot but is less quick to do so with his right foot. Gotta keep an eye on that...
Oh, and for something noteworthy, we did discover this weekend that Benadryl is great for Dax's congestion... Among other things... We had one drunk baby Sat night. He just laughed and danced and squealed and danced and laughed and laughed and squealed... He would have fit in perfectly on a bar somewhere sandwiched between some giggly drunk college... babies... He was hilarious! We now know no Benadryl right before bedtime... Lesson learned the funny way!
As for me, I had a full ultrasound completed today. I'm 19 weeks, but Baby Tyler is measuring at 20 weeks at a whopping 11oz. He's perfect and beautiful and unabashedly very much a boy. He apparently has found a toy in my womb that's fun to play with... Sure hope he grows out of that some day soon, preferably before he's born!
As for me, my cervix is great and we keep on trucking... I'm getting pretty round and feel like I'm awfully close, if not already bigger, to being as big as I was with the twins. I'm also finally able to feel Tyler kick some, although Shep is not able to feel from the outside yet. Hopefully it won't be much longer!
Anyways, haven't updated on our friends in a while, so I'll do a quick run-through... Baby Payton is doing well despite a few ups and downs lately... She's loving her trach and they will decide soon whether to do a g-tube or not... She continues to battle pulmonary hypertension, but pray for that to be well-controlled soon so Lil Miss P can finally go home where she belongs!
I heard last week that Baby Rosemary was potentially going home, and should be home by now pending no setbacks... Pray that she is, and that everyone is adapting well and she's growing stronger by the day!
Baby Kinsley's doing well, but still on a higher setting of oxygen than usual... Please pray for her oxygen needs to go down.
Baby Landon is off oxygen now and doing great!
Laura (mom of 2 preemies) is now about 29 weeks pregnant... The most pregnant she's ever been! Pray for her to stay that way!
Kimberly (friend with the brain aneurysm) is home and adapting. Shes back at work now, but her finances have suffered and she's battling depression. Please pray for her living situation and her emotional well-being as she readjusts to life without her deceased boyfriend and figures out the most cost efficient living situation.
Also, please add a new prayer request... An old friend from my hometown recently gave birth to a beautiful little girl named Caroline. Caroline suffered a stroke at birth and the doctors predict the brain damage to Caroline's frontal lobe is so severe that she will always be dependent for all her needs. Her parents are amazing but could surely use a few more prayers... And we all know that babies have a way of making liars out of doctors everyday. Please pray for Caroline's brain to reroute itself and for her to be a walking, talking testimony one day!
And one more... I know no details, but I do know an 11oz baby was recently born at the hospital where Dax was born... That's HALF as much as Dax weighed when he was born. So far that baby is hanging in there... Please pray for "Half-Pint" to grow bigger and stronger... What a fighter!
So I guess that's the news for now... Please keep Daxton in Tyler in your prayers as they both get bigger and stronger, and continue to pray for all these little miracles and their parents as they survive NICU life and the craziness that follows...
We love you guys and are so thankful for all of you!

Saturday, March 14, 2009

Friday

Morning everyone,

Yesterday was an awesome day! We had Dax's cardiology appointment first, and his echo looked great. The doc made no changes, and we'll see her one more time before Dax gets his cardiac cath done at the end of April. We left there for my OB appointment where I also got a good report. Cervix looks good, baby looks good. No problems, other than my iron is a little low, so the doc recommended I eat more red meat... Since Tyler looooved red meat that shouldn't be a problem! While we were there, the OB, who is also a geneticist, got to see Dax for the first time and she seemed pretty surprised at how well he looks. I knew that she would be :)

We left the OB to go by and see some of our old friends at Centennial, and we got to see lots of people who are really special to us. We'll always remain so thankful to everyone there for everything they've done for us!

So after that, we drove south a bit to Aunt Nat's house in Franklin (thanks again Aunt Nat, we love you!), where we visited a while before Dax's current PT (Yum-Yum) and his former OT (Brown Mama) both showed up to work with him and talk about techniques they both use for helping kiddos develop and grow strong. Dax really showed off during his therapy time... I had forgotten how much he enjoys an audience.

I should add here that until yesterday, I had still only seen Dax roll over twice... And within a few minutes of getting to Nat's house he rolled, and then again during therapy. Just showing off for his entourage I suppose!

At any rate, Dax did great and I'm so proud of him! What a long, busy day for him!

(And then I got to go out with a long lost girlfriend last night for a grown-up night... It was so much fun!)

So that's our news... I'm waiting for my honey to get back home with some greasy breakfast for us, then I'll try to get some work done... Ma Mills is coming to town today to love on the grandbaby for a while...

I'm adding in some pics of a sweet-pea covered Dax in his high chair... He's trying so hard to feed himself with a spoon, and will actually try to feed his helper once he's full. He's also discovered that he loves pickles... Great for teething, and easy to grip!

Love y'all!















Thursday, March 12, 2009

Busy day tomorrow...

Hi all,

Hope you're all doing well. We're well here... Got a busy day tomorrow; first Dax goes to cardiology, then I have my OB appt. Afterwards we're going to stop by and see some old friends at Centennial, then go do a little more visiting before we head home. We're planning for a long, busy, fun day!

I'm doing well. Found out I have a UTI and they're treating me for it. The antibiotic I am on is going to make me crazy for a few days... It's 4x per day, on an EMPTY stomach, with at least 2 hours since the last meal and an hour afterwards before I can eat... In case you forgot, I'm PREGNANT, and I'm having a difficult time doing my meal/antibiotic schedule. Oh well, 1 day down, 6 to go!

At any rate, as you all know it's now March, and March 23rd was the day our baby girl was born. She was born at 21 weeks, and on March 23 I will officially be 20 weeks pregnant with Tyler. It's been an emotional month for both Shep and I and we're entering a scary time now as we get closer to Aubrie's 1st birthday and fear for this pregnancy as we mourn for our daughter. That being said, it never fails that a song comes on the radio when you're feeling low, and can make you cry for hours because it hits so close to home... So of course I wanted to share. Alan Jackson apparently wrote this song for a young mother's funeral, but I think it describes a hurt for a whole lot of us out there... Here's the link:

http://www.youtube.com/watch?v=M1eLe52EH8k


So, love you all, and I'm going to break out the tissue and listen one more time... Will update again after our appointments!

Saturday, March 7, 2009

Update

Short post...


1.) I have a "sludgy" gallbladder. Not sure if it will clear up on it's own or if I'll need to go see the GI doc. I felt a little betetr today after adding "green" juice, tumeric, and ginger into my diet and subsequently taking out everything that tastes good :( We'll see.


2.) Didn't get the house :( The bank negotionator told the realtor he would not accept our offer, and told her to raise the price of the house by 30K. As the house has been on the market for a while now, and was already that price for a while and nobody bought it... IDK, but looks like the family will end up foreclosing. Sucks for everybody involved.


3.) Got to go outside with Dax today :) (Finally a smiley) He likes that big jaundice lamp in the sky:) The pic below was his looking at the sky in complete wonder (or he's growling...)


Thursday, March 5, 2009

Fat Baby Update

Hi all, just wanted to give you a fat baby update... Weighed and measured tonight, and Dax is now 16 lbs, 3.5oz, and 26 inches long! What a big boy! We put him in his high chair to eat some whipped cream and baby cereal today (already blowing his "fabulous abs" diet, as you can see...) I'll include pics below...
Did I mention he turned 11 months old yesterday? Can't believe his birthday is coming up so soon!

As for me, I'm feeling a little better, but am still having shooting abdominal pains. I'm beginning to think it may be gall bladder? If I'm not cured by in the morning I'm supposed to call my MD so maybe we'll be fixed or at least know something by the weekend!

Oh, and as for the house... This house I'm beginning to despise, no matter how bad we want it... We were told we would know something by Wed... As in yesterday... But nothing yet. Our realtor talked to their realtor who is apparently also frustrated, as she keeps emailing and calling the bank's negotiator and is not getting any responses. She told our realtor she was going to file a formal complaint today to try to get the ball rolling... Not sure if that will work out well for us or not, but we just keep on waiting until we hear otherwise... If this goes on much longer the sellers might end up having to foreclose... We'd rather just buy the house and get it over with!

Oh well, here's the pics!


I can use my spoon!
Spoons get slippery after a while, though...

However you eat it, I think whipped cream is delicious!


Wednesday, March 4, 2009

Whining...

Hi all,
Just a quick post to let y'all know we're still alive. Dax is doing great! He's working on trying to crawl, or at least that's what we're calling it:), and the PT told us today we needed to be focusing in on his abs to help him get there... Any of you who have been his big-baby-Buddha-belly know that we won't be getting a 6-pack anytime soon, but we're going to trade in his Baby Einsein's for baby Rambo's and get to work. I told you baby boot camp is underway!

We went to the ENT today and he does still have fluid, so they will go ahead and put tubes in his ears when they do his cardiac cath. They'll also do a complete, indepth hearing test while he's under to track his brain's reactions to sound to make sure he's hearing how he should (they can't test now due to the fluid...) The cath has officially been scheduled now for April 29... We're super happy about that, because he's doing so well the docs can push it back until we're out of RSV season and his little lungs can keep on growing and healing before they have to reintubate him for the procedure. Please keep on praying for him to stay healthy and strong!

As for me, I have a lovely stomach bug that is still full force after 4 full days. Funny thing I have found out, when you're in the middle of a high-risk pregnancy, you no longer have a stomach. You have breasts, and a pelvis, and there is nothing but a baby between the two. The second stomach cramps start, first the mom freaks out, then the docs check you out, but once they rule out contractions you're healed. I saw 2 docs in 2 days, with an ER visit smack dab in the middle, and thankfully, no contractions... However, when the doc is telling you to go home, you're fine, when you're crying on the table due to stomach cramps, you begin to wonder if they've looked at an anatomy textbook lately. At any rate, saw a doctor today who believes I do, in fact, have a stomach, and I do, in fact, have a stomach bug, and he and I are in complete agreement that we are glad it is not contractions, but we also agree it might be appropriate to treat the stomach bug, too. That being said, hopefully in a day or two I'll feel a little bit more like myself and can quit sitting around whining all day (which is primarily what I have been doing the past 4 days...)

So, off to "The Fetus Formerly Known As Sheniqua," who is now known as Tyler, by the way, he still looks great and my cervix still looks great, so all is well. Thanks for all the continues prayers and support!

Love you all,
Mollie