Tuesday, April 28, 2009

Cardiac cath

Soooo, tomorrow's our procedure... Got the deets from the cardiologist today and tomorrow will go as follows...

NPO from 5AM on

At Vandy by 6:30

Meet with all the folks involved

Sedation and intubation

Tubes in the ears 1st

Cardiac cath next to look at the effect the hole in Dax's heart has on his pulmonary hypertension. They will insert 2 lines into Dax's body hopefully at his groin, but possibly in his neck, and will thread them into his heart. They will use them to determine if the hole is having major or minor effects on the pulmonary hypertension, so they'll be able to determine if it's necessary to close the hole now or wait a couple of years. We hope to be able to wait... They'll also insert an esophogeal ultrasound down Dax's throat so they can get a really close look at his heart...

After that, the plan is to try to start weaning the sedation and hopefully get him extubated prior to moving him to a recovery room, where he will undergo an in-depth hearing evaluation (ABR) that can be completed while he is still sedated...

All in all, hopefully he'll be able to come back around after 3-4 hours, max, and then we can hang out and eat hospital food and he can flirt with nurses and add some members to his fan club. Hopefully it'll be like a vacation for him :)

He has to stay overight for observation, then we'll discharge Thurs morning and then we'll jet over to my appointment for my weekly date with my cervix checker... Then life as usual...

Or at least that's all the plan. Most of you know how my plans usually work out!

We'll update later this week. Please keep us in your prayers!

Love y'all!
And for your viewing pleasure... A picture from Dax's very first (and unsuccessful) fishing trip. :)

Friday, April 24, 2009

Weekly Update

Hi all,

Sorry it's been a while since my last post. It's been an eventful week for us! We'll start with the main man, Mr. Dax... He's doing really well! He's had a bit of a snotty nose for about a week, but we're blaming that on the weather/sinus/etc... as there's no fever, just snot. Lots and lots of snot... I'm so thankful for the hospital suctioning machine we have... It can suck boogers from his toes, I swear, and there's something so reinforcing about getting out those big super-duper ones... Or maybe that's just me! (BTW-Never in the history of my life did I think sucking giant boogers out of a kid's nose would be the highlight of my bedtime routine...)

Our little maniac is doing some really fun stuff this week :) His new found ability to commando crawl is very neat, even though he often leaves a slug-like trail of snot and slobber everywhere he goes... But he's GOING :) Always the underachiever, he'll have a 10-second burst of speed and adrenaline and crawl 100 mph towards his goal, then... Stop. Lie down. Suck the thumb. Contemplate. Repeat. So the trip across the living room might be quite a commute, but he does get there, just on his own time. That's our boy.

He's also rolling over and over and over and over... especially during diaper changes :)

We have a new PT now and she's been out to see him several times. She seems to be excited abut how well he's doing and how quickly he learns new skills. She feels that all his motor patterns right now are completely normal, just a little delayed. That's exciting for us, as inappropriate motor movements could be indicative of neurological issues, but he's doing everything the way he ought to, or at least a very close approximation of it. (We have reciprocal hip movement now, Yum-Yum!) She also did a tone assessment to check for inappropriate levels of muscle tone, with too much or too little being another indicator of neurological issues. The tone assessment revealed NO abnormal tone :) Take that, crazy Dr. Suchandsuch who told us the only reason Dax could sit and hold up his head was his hypertonia. Daxton: 10, Crazy Dr.: 0.

As far as speech, we now have our home health speech therapist coming out 2x a week to work on speech and swallow. He's only seen her a few times, but we're hoping for good progress quickly. Dax is quite a bit behind in his verbal skills but he's coming along slowly but surely. He, just this week, has begun to say what I interpret as "YAY," as he's smiling and proud of himself when he says it, but it comes out as more of a "aaaaagggghhhhh" in the voice of an old man who chain-smoked for 40 years. It's still ridiculously cute.

We ordered a Baby Signing Time video for Dax at the ST's request, and Dax seems pretty taken by it. We've been working on baby signs off and on for a long time, and hopefully he's actually old enough now to put 2-and-2 together. He's already starting to make the hand motions for "daddy" and "mama" a little more frequently now. And before you ask, yes, he'll be able to talk eventually, but baby signs are always a good place to start.

And just to prevent Dax from getting bored on the one day a week he doesn't have therapy, he'll soon have an occupation therapy eval :) We'll be getting home health OT through the same company that supplies his ST and PT. Can't wait to get started!

So, as excited as we are that Dax is finally getting teeth (!!!) I was a little discouraged today to find his cute little tooth coming in is a not-so-cute shade of brown. After freaking out a while I finally talked to his pediatrician, and she told me it's not uncommon for sick preemies to have discolored teeth, but it's even more likely that the discoloration was caused by the high levels of bilirubin when he was so jaundiced for so long. Not only can a baby's skin become discolored, the developing tooth buds can also be stained, and that's probably what happened. There is no fix for it until his baby teeth fall out and his permanents come in, and in the meantime we need to make sure to brush his teeth twice a day as he's at a higher risk for cavities. It makes me sad, but I guess in the grand scheme of things, and after all the narcotics and viagra he's been on, having the teeth of a meth addict probably makes as much sense as anything else! It'll go well with his chain-smoker's voice!

And just in case you forgot, he was REALLY jaundiced, for a REALLY long time...

Hmmm, and finally, of course next week is the much anticipated cardiac cath. We'll meet with the doctor on Tuesday to go over the specifics, then Wednesday we'll go in for the cath and spend the night for observation. That's when he'll get his ABR hearing test and have the tubes put in his ears, too, so it's going to make for a long procedure, and of course he'll be sedated and intubated for it... Please keep him in your prayers this week!
Oh, and one more thing... Dax is going on his first boat ride tomorrow, and he's taking his fishing pole! We'll be sure to get some pics of him reeling in his first fish :)
Okay, so on to me... Or, more importantly, Mr. Ty. I had my OB appointment today and everything still looks fantastic. My cervix, placenta, uterus... everything... looks great. He has been moving and shaking in there and the ultrasound tech got a picture of him today yelling... Although she preferred to call it yawning. I know better... It was definitely a yell.
As for other news, Shep landed a new job this week, and we're very excited about it :) Couldn't have happened at a better time, either, since it looks like we're getting our house! We haven't accepted the bank's offer yet, but we probably will, and pending no more hi-jinx from their side we will be in a new house soon. Best-case scenario, we can take the next month to paint, clean, move, etc... and then close on June 1st. That, being best-case scenario, will never work out that way, but it's nice to dream. Oh well, will keep you posted!
On to Baby Payton now... Thanks so much guys for all the prayers for her. The cardiac MRI last Friday went better than expected, as I already told you, and then the docs scheduled a cardiac cath for this week. Afterwards they told Payton's mom that the cath surprised them all... The heart actually looks much better than expected, and they'll soon start trying to wear her meds, eventually get her a mic-key button, and then one day, maybe 3-4 months from now, they expect her to be able to go home. It's been the first time Payton's mom has heard that wonderful "H" word in a long time! So please keep on praying for Princess P to get better and stronger and be home by her birthday!

I think that may be all for now? This post has been long enough... Hope you enjoy your weekend, and if you're out on the lake be on the lookout for the cutest boy in America and his Sponge Bob fishing reel :)
Love y'all!
Oh, and here are a couple of pics.....

This is my observant, intellectual look.

This may look like a sweet picture, but Mommy was actually thinking about throwing me in!

Family photo op. Not sure what Dax is looking at?

Yummmmm... Lola thinks the ducks look delicious!

Until this picture, I was 100% sure Shep was Tyler's father. Now I'm wondering if maybe there was a drunken night with Pac-Man or The Joker I forgot about?

Friday, April 17, 2009

Two things

1. OB appointment went well. All is fine. Tomorrow I will be 23.5 weeks pregnant... which is of course the gestational age that Dax was born. So, after tomorrow, any extra days are just gravy!!!

2. Payton's mom reports Payton did great with the MRI. She met with the cardiologist this afternoon and he says the cardiac situation is def not worst-case scenario. He says the heart has definitely shifted, but she'll know more about what that means for the long- and short-term, and any other findings there may have been, on Monday. Gotta love getting tests run on a Friday, and everyone gets to go home for the weekend while you sit and stew!

Thanks for all the continued prayers for us and for Miss Payton and her family... We love you all!

Thursday, April 16, 2009

Pediatrician Appointment

Okay, so my OB appointment is not until tomorrow, but I had to get in a quick post today. We had Dax's 12-month well-baby check-up today and... What an awesome appointment! First of all, our ped is just thrilled and amazed at Dax's continuous improvements... He's far from being caught up with his actual age, but he is making progress in that direction. She pulled out Dax's growth chart and he continues to grow at a PERFECT rate, and... we finally made it onto the growth chart for his corrected age for weight and head circumference! His current weight, 17lbs, 15oz, puts him at the 5th percentile for a 9 month old, and his head circumference, 17.5", puts him at the same. We're still a little under for height (26.5"), but we're not sure far off. He's had really good growth these last few months since he's been home; a few more months like this and we'll be sitting much prettier.

More importantly than that, we discovered today that WE FINALLY HAVE A TOOTH!!!! After three months of drooling and chewing, finally some results!!! It's barely through, but as soon as he lets us get a pic we'll post it. This is quite possibly one of my proudest moments as a mommy!

And just one more thing... (It's been a really good day :) Guess who decided yesterday that rolling from his back to his belly is not so tough? And guess who did it for his daddy, and his nurse, and his speech therapist... and NOT HIS MOMMY??? Yes, that would be my son. Well, right after I ranted and raved today that he was going to make me wait two weeks to see him roll like he did when he first starting rolling belly to back, and used a few choice words about what a rotten, mean child he was, he rolled for me in the doctor's office. Awww. What a sweet boy. Who could ever say anything other than what an angel he is? ... Today?

And speaking of rolling, that completes the third goal we had for baby boot camp. Of course, his goal was to be rolling both ways by 4/4, and he was in fact 11 days late, but I suppose he's never done anything on my schedule and it would be ridiculous for me to think he would start now. He WILL, however, be taking steps by July 27 if it kills me... and it just might!

My mom says I am a mean mother. I say I learned from the best :P

Don't forget to be praying for Payton! MRI tomorrow... Will let you know once I hear.

Oh well, that's all for now. I'm going to make a big birthday post once I get pics, but that may be a while... In the meantime here is one of my recent favorites... How cute can a baby get???

Tuesday, April 14, 2009

Please pray for Payton

Hi all,

Just in case you're running out of things to pray for, I've got another request for you... Baby Payton is back in a rough spot again. Payton has been dropping her oxygen saturations quickly and without clear cause... Like from 97 to the teens in a matter of seconds... Her mom reports the doctors think she is either trying to go into cardiac failure or her veins are narrowing. Either way it's not good. Payton will be getting an MRI on Friday to get a better picture of what is going on...

Payton's mom is asking everyone to be praying hard that whatever problem they find is something they can fix. This is a very crucial test and the doctors are waiting on the result of this MRI to determine their course of treatment and Payton's future. Payton's been in rough spots before, and by God's grace and her own sheer stubbornness she's pulled through it. Please pray for a repeat performance!

And also, though her mom would never ask for it, please pray for Payton's family as they ride this roller coaster with her. NICU life is never easy, and this family has had it harder than most.

Thanks again everyone. We love you guys!

Monday, April 13, 2009

Roadtrip and an echo

We're back to the real world again after a great trip to Mississippi this weekend. We ended up leaving Nashville late and didn't make it to Ma Mills' until close to 3AM, but the trip itself went very smoothly. We hooked up Daxton to his continuous feed and he slept like a... baby... and we put Lola's bed in the very back and she slept the whole ride, too. Very quiet, and very peaceful.

Day 1 in MS, we spent the whole day with Dax's cousins and I got to meet the littlest one for the first time. She's a little younger than Dax and they just laid and played for a long time, chewing and drooling together. He pulled her hair, she slapped him around a little, and they ended up having a bit of an inappropriate kiss at one point, but all in all it was very sweet to watch. Dax got to go on his first golf cart ride, visit with some family he had never met, and then went to his first T-ball game. We dressed him in his baseball uniform and cap in case they needed an extra player, but it seemed they had everyone they needed. Oh well.

Day 2 in MS, we slept as late as possible then got ready for his little birthday party... Which somehow morphed into 60 people, 100 hamburgers, 500 pictures, and lots and lots of goodies. Dax was a trooper as he was passed from sanitized person to sanitized person, and he completely demolished his cake. There were no mishaps other then his oxygen tubing getting shut in a door for... we're not sure how long... but he never turned blue or passed out so we won't count that as a mishap. The party was amazing and we had the best time showing Dax off, and finally getting to see some of the people who have been so wonderful to us since all this happened. We're so grateful for all of you!

So other than lots of goodies, know what else Dax got a lot more of while we were in MS? SPOILED. We took the weekend off baby boot camp and he was held by somebody most of the trip. Guess who's still expecting the royal treatment since we're home? Yeah. WaaaaaaaaaaaaaI don't want this toy I want that toy and you have to hold me while I play with it aaaaaaaaaaaaaahhhhhhhhhhhhhh. Rotten.

My friend Kayla was there to do photographs for the party and she was GREAT. If anyone needs pics done down that way, she's flexible and affordable, and maybe she'll sneak me some of the pics early since I gave her some free ad space :) Hint, hint, Kayla!

Meanwhile, Dax's other mother, Lola, found herself a new boyfriend about... 80 dog years her senior. Mom and Dad recently adopted the 15-year-old German shepherd of a couple that moved into the nursing home together after almost 75 years of marriage, and Smoky and Lola made great friends. It was very sweet to watch. He wouldn't swim with her or eat sticks (yes, EAT, not fetch) but other than that they were a match made in heaven :)

Day 3, Shep and I snoozed a while instead of getting up early like we'd planned, since there was a little baby in our room that seemed to think just because he had been passed around like a hot potato and eaten 10 lbs of frosting and cookies that he did not have to sleep well all night. Who does he think he is? We finally drug out of bed and loaded the car and hit the road for home. Another uneventful drive. Dax did great and never fussed the whole 6 hours we were on the road as long as there was a mommy beside him playing peek-a-boo or paddy-cake or feeding him or something of the like. I definitely can't complain!

We do have lots and lots of pics to post, and I promise to do that later once we get them all collected. Can't wait to show off!

And then today, back to the real world. Dax had a cardiology appointment this morning and everything looked fine. The echo showed no improvements, but also no worsening. The doctor increased his Lasix, Viagra, and Digoxin due to his increase in size, and we'll see her again after his cardiac cath on April 29. I'm a little nervous about that procedure and we're planning on being in the hospital overnight afterwards. Ugh, Will keep you posted!

And last of all.... Dum dum dum.... We heard from our realtor on Friday and looks like we're one step closer to getting our house... You remember, that house we've been trying to buy for months now, but the bank apparently would rather foreclose on the house than take our money? Well, we've apparently made it through the first of two required approvals and we should hear within the next two weeks if we get it. Now, if you've been following this story you understand that two weeks = two months and a bunch of headaches, but we'll see.

So y'all keep on praying for our little one as he gets bigger and stronger and prepares for his cath later this month. Pray for all our loved ones that they'll stay healthy and happy and know how special they are. Pray the house we're trying to buy might soon be ours if it's meant to be.

Please pray also for all the sick babies and grieving parents. This is meant to be a joyous time of the year for followers of Christ, but it's been a bittersweet one for us and many friends we have made in the past year, as many lost their babies around this time last year, or have recently lost their little ones and are still grieving, and there are so many sick children we've come to know and love that still struggle to live. Please keep us all in your prayers as we make it through the difficult times.

Thanks so much everyone. We love you all and are so glad we have you in our lives!

Thursday, April 9, 2009

Quick post

Hi all!
We're about to be headed on our first road trip (yay!) but I wanted to give a quick update... All is well here... We had a great week with Dax finally starting his speech therapy sessions, then he had a swallow study this morning... I'm a little frustrated that he's still aspirating on liquids when we have him drink from his sippy cup, but the recommendation is for him to move straight to a regular cup. We all know Daxton has never done things in the order he's supposed to, so we'll try out the regular cup and see...

I had my appointment afterwards and everything looks great! 22 weeks along, with a perfect 1lb, 2oz baby boy. Very weird to watch the black and white baby on screen, and know what he would look like in real life. Did you know babies that age have no butt cheeks or nipples, and they're covered in hair? At least mine were. Oh well, shooting for a much bigger baby, WITH nipples and butt cheeks, and a less hairy back. Keep on praying!

I must pack now... Hope you all are well, and I hope you have a wonderful Easter weekend. I promise to have lots of new pics next week!

Love you all,

Saturday, April 4, 2009

A year in pictures...

We'll start at the end of the year and work our way back....
First, just a sneak peak at Daxton's birthday pics... The cake was a success!
I'm one year old now! 17 and a half lbs, and 26 inches long.

Learning to eat like a big boy...

Happy to be home, and well!

I spent my very first Christmas at home, after 8 long months in the hospital...

In the hospital... I was much happier once my g-tube and hernia surgery was over!

Oh no, back on the ventilator, but not for long this time.

Look how raw my little feet were from blood draws...

I dressed up twice for my 1st Halloween, and both were very suiting... Superman and...

... an air freshener! (Although one might say I was more of an air pollutant :)

Learning to sit up and hold up my head!

Hydrotherapy with Brown Mama. It really helped me learn to relax my muscles.

My very first bottle!

The first time I met Clyde, my first best friend.

My due date party! I was 4 months old! It was also my very first day on the nasal cannula. (Notice the same birthday hat in the recent birthday pic from above...)

A very special doctor let me go outside for my due date party. I saw the sun for the first time!

Here's me on CPAP finally, after more than 3 months on the ventilator. Mom and Dad could finally pick me up all by themselves, whenever they wanted to!

Finally in a big boy crib!

After my eye surgery. My poor eyes were pretty swollen...

Snuggling with my daddy after over a month of not being able to be held...

My first clothes! Yay for making 3.5 lbs!

Complete renal failure. 5 days, no pee.

My first Mother's Day. Mom and Dad got to see me with nothing on my face for the first time! Then they got to see me turn blue for the first time of many more to come...

Our first family photo.

Mommy got to hold me for the first time when I was 2 weeks old. It lasted 30 mins, and I did great!

Look at these bright eyes! And hairy back!

All the cool NICU babies have rasta hats :P

Heart surgery when I was less than a month old....

I FINALLY unfused my eyes at 2 weeks. This was my first pic with my eyes open.

One week old. I've entered the scaly phase.

Day 1: Daddy's wedding ring.

Day 1: Holding mommy's hand the first time. Look how tiny my fingers are!

Day 1: The very beginning... 1lb, 7oz. 11.75" long. My arms are the size of Mommy's fingers... and no one could have ever anticipated what a big, handsome, amazing boy I would become a year from now!

Thursday, April 2, 2009


Okay so I had to throw in one more pic... Most kids hate hats and glasses... My son loves them! (Please disregard the shirt that says "I love my Mooo-mmy." I did not dress him, and do not think the reference to me being a cow or having milk is super funny.) If you look closely, you'll see we are at a RESTAURANT. Shocking, I know. You might not understand the extent of my neuroticism, so I'll explain.
Dax's 1st restaurant trip is actually part of a systematic plan I have to expose Dax to varying levels of air quality. It was a "moderate" air pollution day, and we sat on the deck towards the street during a non-busy part of the day. We positioned ourselves away from other diners, and made sure Dax did not touch anything, and no one touched him. He did exceptionally well, and only sneezed a couple of times when we first arrived. He actually did exceptionally well considering I dropped his oxygen about halfway through the meal, which jarred the tank enough to cause it to go in between numbers, leading to Dax not getting any oxygen for about... oh... an hour before we noticed, since he doesn't wear his pulse ox during the day anymore. On a good note, when we did realize it, we checked his sats and they were maintaining at 85-86 with no oxygen support. That's pretty exciting! Hopefully he sustained no more brain damage than the average Mexican restaurant patron drinking a margarita or two... And as he showed no signs of distress I think he did just fine. Pretty good for the former "blue boy" of the NICU!
Okay, so on to the real update, just wanted to let you guys know that the results from Dax's stress test came back, and he passed as we all thought he would. Now that we have that result as well as the normal hormonal panel, I called his geneticist and told her. She's very happy, and is going to try to coordinate with a doctor in Canada who has been researching cerebellar hypoplasia in premature babies to see what that doctor says and recommends. I'm excited to hear back from that conversation...
And I went to my appointment today... All's well, Ty's growing, and life is good.
As for our buddies, Kinsley is home now and doing much better. Thanks for the prayers! Payton is doing better after a couple of rough days. Please continue to pray for her heart and lungs, in addition to her tummy as she's been spitting up lately. I also want to add in a new prayer request today... There's a mommy blogger I follow who has a beautiful baby girl named Kennedy who was also diagnosed with cerebellar hypoplasia. Kennedy has been having some ongoing issues, and her mother received a devastating diagnosis this week. If the doctors are correct, Kennedy's brain will continue to atrophy and she will have a very short life expectancy. Please pray for Kennedy and her family, and I'm sure her mother would love to hear from you with words of encouragement and support if you feel moved to do so. Her blog is http://kennedybonomo.blogspot.com/ .
Thanks so much! Love you guys!

Wednesday, April 1, 2009

It's picture time :P

Look how far down the ground is! Ooooohhhhhh....

Chillin on the couch with Amos, my extremely jealous older brother.

I just loooove making messes. I'm alllll boy :P

This was the best pickle I had ever had......
.......until I tasted this one!!!

Fingerpainting gone haywire

Only a snippet of the 5-minute long kiss he gave his Ma Mills...

Dax working on his therapy with Yum Yum and Brown Mama

And here's a clip of Dax that fateful night we decided to give him Benedryl, only to discover it made him turn into the disco king! (Please ignore the baby-toy cluttered floor and the make-up-less and non-hair-fixed mama!)