Saturday, February 28, 2009

Guess what

Short post... 1st of all, might not have to sell Daxton on EBAY after all... He thinks he's soooo slick, but I caught him rolling just out of the corner of my eye last night... HA. I win!

Secondly, STILL no word on the house. For those of you know know how patient I am (which would be not at all) this is murder. Hopefully early next week...

That's all we've got. Love ya!

Thursday, February 26, 2009

Our son, the comedian

So our son thinks he's funny. My husband, and our nurse, also think he's funny. I do not. He is not funny at all. I threaten to sell him on EBAY... My threats do not work... He STILL will not let me see him roll over. Eeeeeverybody else has seen him roll over. Sure, roll over for Daddy, roll over for nurse... But me, noooooo. On Tuesday I stared at him for 15 minutes and nothing happened... Within THREE SECONDS of me turning away, I hear a "plop" and look back and he'd rolled. Last night, I put him in his bed and went to go get his meds... By the time I came back less than a minute later, you guessed it. Rolled over 2 more times in his bed last night, never for me. I'm selling him on EBAY!!! And I mean it this time!

We went for his flu shot on Monday and he was a champ. He turned red but never even shed a tear. Such a big boy.

Other than that, it's been a pretty uneventful week for him. Shep and I took the day today and went shopping for clothes for pictures, and we came home to try Dax's new outfit on him. When I say he was the most adorable creature I have EVER seen. Can't wait to have pics made!

As for me, I had my high-risk OB appointment today and everything looks fantastic. The OB that saw me today is also a geneticist and we ended up spending more time talking about Daxton than the new baby. She's going to snoop around in his records now too to see if she can come up with any ideas or suggestions... Daxton is fast becoming an international man of mystery :P

Something exciting that came out of today is that I will now be seeing the high-risk OB exclusively for my OB needs. I like my regular OB, but with weekly high-risk appts, and with Daxton's never-ending abundance of appointments, it's much more convenient for me to just see one OB instead of two. I'm so thankful that they agreed to take me on. This means I will definitely deliver at Centennial... That's a relief for me, since we already know everyone there and between my last two deliveries and my bedrest everyone there has already seen me naked!

And finally... Today is Thursday... We're supposed to find out TOMORROW if the seller's bank will accept our offer on the house. Say a little extra prayer, and we'll let you know when we do!

A quick update on Baby Payton... She had her trach placed this week, yay!, and also had a retinal reattachment done while she was under. From last report, Payton is doing pretty well but is continuing to have a few scary moments as her body adjusts... Please pray for healing and strength! She's such a fighter!

And to close, I'm throwing in a vid of Dax in his new jumper... He hasn't quite figured out how to make himself bounce yet, but he's trying...

Love you all!

video

Sunday, February 22, 2009

Finally some pics....

I don't have little smiles. I open my mouth reeeally wide and squeal! (Notice all the tape on the nose... Must have been one of those days that he decided to quit his oxygen habit cold turkey...)


Here I am helping Daddy with my breathing treatment. Thank goodness I don't have to do those anymore!

This is my nurse Beth after she gave me my Synagis shot. Who has the bigger pout?

Just napping with my two mommies...



My first day at the park... Not quite sure what to think!




My first time sitting in my high chair...



Napping with my best friend... Who just happens to be delicious!

Thursday, February 19, 2009

High risk OB, plus some extra

Hello again,

Had my appointment at the high risk OB today and it went GREAT. The baby is still a boy, and still perfect, and everything with me still looks great. The doctor who saw me remembered us well from last year and is ready to treat this pregnancy with every precaution, but still actually expects it to be a perfectly normal pregnancy. To be 100% sure of that, I'll be going to Nashville weekly to get cervical checks until the baby reaches 36 weeks, and if they see any changes they'll proceed from there accordingly. I'm very relieved!

The doctor reassured me that in his 25 years of high risk OB, he has seen many, many women have issues with twins, and then return and have perfectly normal singleton deliveries. He feels we'll be one of those deliveries...

During the ultrasound I had the tech check the baby's cerebellum to see if there are any abnormalities, and everything looked perfect. That was a relief, since Daxton's geneticist felt that Dax's cerebellum and other brain issues might be related to a genetic disorder of some type, thereby potentially being something we could pass on to another child. Afterwards, however, we looked back at Dax's ultrasound from the week before he was born and found that Dax's cerebellum was also intact and perfect at that time. Believe it or not, this is a bit of a relief for me. As a mother of a child with a disability, you always wonder if there was something you did, something you ate, something you were around, that caused your child to be born anything other than completely perfect. I've often wondered though, since we found out that Dax was missing his cerebellum, if it was a result somehow of his extreme prematurity and multiple health issues when he was tiny that somehow caused the brain to change, and I have now met a few mothers online who had children with compromised health at birth and now have no cerebellums. It's all extremely interesting to me and would make a great research project for an aspiring neonatologist or neurologist... If anyone knows anyone interested!

So onto the star of the show, Daxton is doing fabulous. He saw his PT twice this week after not seeing her for 2 weeks, and she was extremely happy with all the progress he's made. He sat independently for quite a while and showed her how he's almost rolling over, and he stood and talked to her a while... His PT told me during her first visit this week (with a disclaimer that she is often wrong, that these kids prove her wrong all the time...) that she feels Dax will definitely be able to walk, although she feels he may always need an assistive device of some sort to help with his balance. I'm excited about that in one way, because I always wonder if I overlook what I don't want to see in favor of what I do, and also because it was just less than 3 months ago when a neurologist told us he may never sit up, roll over, or walk, or would be extremely delayed if he did. On the other hand, I told her I had to disagree for now, that I see him walking without any assistive devices... Because I refuse to give him any leeway at this point. So on Tuesday we started "Baby Boot Camp" and set a few goals... By April 4, which is his real birthday, he will be rolling over independently, sitting up independently, and will be mobile somehow, be it crawling or scooting. He will technically be 8 months old developmentally at that time, and I feel those are pretty reasonable goals. Then, by July 27, his goal is to be standing independently and taking a few steps...

So the goals may be a little steep, but I feel like if we don't expect a lot from him and push him to do more and make progress, then who will?

The main issue will remain his missing cerebellum, however, and that will be our biggest monkey wrench. The cerebellum is in charge of smooth motor movements and balance, and, well, those things are pretty important when you're learning to crawl, walk, etc... But I'm not telling him there's anything he can't do! (Or maybe I should? You may remember how oppositional he was in the NICU... If I told him he can't walk he'll be in the Boston marathon by age 6!)

As far as cool new things he's learned this week, he's now pushing up onto his hands more rather than just on his elbows, and he's catching on really well to holding a sippy cup... He's also able now to stand for short periods at his little table and manipulate the items on it without ANYONE holding him up. Now, he relies on the table a lot for support, but some on now... It's HUGE that he can do that!

I suppose that's the bulk of our news for the week... Very fact-filled this week, too, I might add. Not a lot of fluff. Very unlike me!

Oh, and as for the house, we're still waiting to hear back from the seller's bank. They told our realtor last week that it could be another 2 weeks before we know... Isn't it great how all these banks are going under, and we're trying to throw money at them and they are in no hurry to take it? So goes life...

Oh well, hope you're all doing well! We love you all and can't wait to let Dax meet all of you! We're getting closer and closer to spring... It won't be long now! Please keep on praying for him and all these other preemies... Along with the families and those who work with them...

And speaking of friends, Baby Payton is doing well at Vandy and they are hoping to push forward with a trach soon... Please please please keep her in your prayers, that this baby will get and stay healthy and be able to get the trach and go home soon! They've been through so much... Luckily Payton is a fireball if there's ever been one, and she ain't giving up very easily!

Ok, love you all! Have a great weekend!

Monday, February 16, 2009

BPD Clinic

Hello everyone,
I'd like to start this post by apologizing to our friends who gave us a new camera for Christmas (because they were tired of "our crappy 2 megapixel pictures." What's a megapixel?) We STILL have not downloaded the software so we have tons of cute pics, but they're all still stuck on a memory card at this moment. We love the camera! And can't wait to share the pics one day!

Just wanted to leave a quick note about our appt today. We saw the pulmonologist today, but not our routine pulmo. The department head was on today instead of our normal guy and he seemed very happy with Dax's ongoing progress. They did make one change at our request today, and that change means NO MORE 10 MINUTE BREATHING TREATMENTS x2 PER DAY! Yay! As our little man has gotten stronger, and sneakier, breathing treatments have become more of an obstacle course... But now he'll be getting the equivalent of an asthma inhaler x2 per day... 2 puffs in the morning, 2 puffs at night... And hopefully our lives are about to get much, much easier!

Other than that, they want us to continue pushing Dax's oxygen flow down as we can... Can't be letting him get lazy!

And while we were out I think I managed to put a kibosh on my whole doctor problem from last week. :) And I didn't even have to be ugly about it...

And finally, I was lying on the mat with Dax a minute ago working on some of his exercises with him, and I had to stop myself and laugh. What is it that makes us feel so free to say whatever it is we want to to babies, and where do these ideas come from? I was talking to him in my sing-songy baby voice, telling him how if his alarm kept beeping I was going to bite his legs off and throw them in the fire... And I'm going to nibble off his ears and feed them to the dogs... And then I'm going to bite off his toes... And I've heard other people say similar things to their babies and I never thought anything about it... Where do these things come from??? And if you've never said such things to a baby, please don't report me to DCS!

K, love y'all! Dax has scooted backwards halfway across the living room... Time to give him some more attention... Or bite his knees off...

Friday, February 13, 2009

I'm back...

Hi all!

Sorry it's been a while... All's well here. We've finally had a few days where we can take Daxton out for a few minutes and he really seems to like it. We even took him to the lake one day and let him see the water and the geese... But the wind was blowing pretty hard so we kept him all wrapped in a blanket and didn't stay very long. We let Lola the Bulldog (Daxton's other mother) go so she could have her first swim of the year, and she fetched almost every stick within a 3 mile vicinity of the lake and nearly drowned on multiple occasions trying to fetch stumps and logs from the water... But she had fun, and she slept very well.

I say she's his other mother... Lola checks on Daxton when he cries, and frequently walks over just to lick the side of his face when he's lying on a mat on the floor asleep. She sometimes lies down next to him by his mat and lets him pet her nose. She runs to protect him when there are loud noises, and she checks on him during the night. It's very sweet if you don't mind your baby having a wet streak up the side of his head all the time, or that he's starting to bark.

We didn't have PT this week but we did have Early Intervention today, and our therapist is still just super excited about what Dax is doing. He's continuing to make progress with his balance while sitting and he's starting to try to hold a sippy cup with thickened juice... And he looooves it. You've never seen his so determined as when he's trying to get that cup in his mouth. It's very cute.

We had a cardiology appointment this morning and it was fantastic. His echo is continuing to show improvements, and his viagra schedule got changed from every 6 hours to every 8. Whoo-Hoo, no more getting up at night for drugs!!! Also, his ASD (the hole in his heart) is smaller than at last exam, which is a good sign. We're still going to do a cardiac cath, but the doctor is considering pushing it back to late March or even April, depending on how he looks next month after the change in viagra. Sooooo, that's good news! Oh, and btw, he weighed 15lbs, 7oz today...

When we got home today our nurse had to give Dax his Synagis (his monthly RSV shot)... He cried about 30 seconds; she cried a little longer. I'm not sure who's more pitiful on Synagis days...

Our nurse has also been assisting Dax to learn how to throw a "real" fit. (Thanks, Beth...) When he cries and pouts during his "hold me now or I'll give you a headache" moments, she'll show him how to thrash his legs and arms at the same time for effect. It was really cute at 1st, but now he's catching on... We're now adding "fit-pitching" to his long list of talents...

And as for our tiny friend, Baby Payton, she is now at Vanderbilt to see if she will be able to get a trach. Her mom reports she is doing better with her oxygen needs and the docs are still trying to figure out the best course of treatment. Please continue to pray fer her and her doctors.

On to my dad, he stayed at UAB until Thursday and apparently the docs weren't really able to tell them anything. Dad said it was fun... He was locked in a videotaped, bugged room for 3 days wearing 25 electrodes on his head while they flashed strobe lights, withheld sleep, and water-boarded him (according to him.) Not sure who was more miserable, him, or my mom who had to stay with him and listen to him complain ;P At any rate, he's home now and back to normal, whatever normal is. Please keep praying for him and for solutions to his medical issues. Here's a pic of him in his hospital finest...


And to jump for a moment onto that soapbox I love so much, without naming names or giving specifics, my son is smack-dab in the middle of what I feel to be unprofessional and unethical conduct by a doctor who, by the way, is not my son's doctor. Although I'm not 100% certain, it appears to me that a doctor, who, again, is not my son's doctor, has been attempting to persuade doctors who ARE my son's doctors to do tests that they have already explicitly told me that Dax does not need. I'm waiting to gather a few more details before I open this big fat gaping hole that is my mouth, but by the end of next week I am expecting answers and solutions or things will get really ugly... And I'm beginning to like ugly. It goes well with mother's instincts and pregnancy hormones... (and HIPPA violations and insurance fraud...) Please pray for guidance this week as we approach these issues.

Soapbox exited.

So that's all for now... I'm adding a short clip of Dax dancing... He's discovered he likes to shake his booty! He looks like he may have my rhythm right now; hopefully he'll develop his father's over time! (Notice he starts to cry when he thinks the nurse is going to let him sit back down...)


video

Monday, February 9, 2009

Oh, btw...

Whoops! Please add my dad to your prayer list this week, too. He's going to UAB for a 3-5 day seizure test to try to figure out why he's so crazy ;P. Please pray for them to find the answers and for a solution to all his medical problems...

Thanks! Love you all!

Sunday, February 8, 2009

Procrastinating...

So I should be doing paperwork, but I'm taking (yet another) break... Everything's great here. Yesterday Shep and Chris were taking a boys' day to fish, so Daxton and I took a day to go visit some friends. We stopped at Aunt Nat's 1st and they entertained and fed us... Then we took a (very) scenic route over to Aunt Wee Wee's house to visit, and, they, too, fed and entertained us. We took advantage of everyone's courtesy and left dirty diapers in both places as a token of our gratitude :)

(It was a very scenic route due to my current inability to follow directions, which caused me to drive about 20 minutes in the wrong direction... But it was a beautiful drive!)

After our long, fun, eventful day out, Daxton didn't sleep very well last night. Apparently he was too tired to sleep, which is a concept that evades me, but it seems to be what happened. Luckily it was Shep's night to get up, so I got to sleep through most of it...

Oh, and did I mention that Shep's boat went kaput while they were fishing, so Shep ended up staying at home cleaning and doing honey-do's prior to his all-nighter with Dax. So much for a relaxing man day!

I guess that's all our news for now. My pregnancy's still fine, and we still haven't heard from the new house. We're super excited about it and hope it works out... We've already got the furniture arranged and the paint picked out...

Hope you all have a great week!

Oh, and btw, Baby Payton's mom reports she is stable right now, and staying sedated at this time. They are hoping she will transfer to Vandy on Monday to get a trach... Please continue to keep them in your prayers. Payton is such a little fighter!

Thursday, February 5, 2009

It's Thursday

Hi!

1st of all, you'd be amazed at how much trouble I get in if I haven't updated in a few days... Quit worrying; all's well in the Sheppard household!

For starters, our little monkey is doing great. He's 15 lbs before he poops, and just seems to be growing bigger every day. He's been coughing some, but it's not a congestion cough, it's more of a reflux cough. We've been giving him gripe water, and that helps, and now we're trialing out a tiny bit of apple cider vinegar (yummy) before eating to help keep his belly settled. It actually works, with the only drawback being his pee smells like a distillery.

Other than the reflux, Dax is doing great. We've still been able to stay low on his oxygen and we've made it through 3 months of the dreaded cold/flu/RSV season with NO ILLNESSES. That's pretty close to being a miracle considering all the crud that's been floating around... Just 2 more months to go, and then he can emerge from his bubble and actually get to meet you all...

As for new fun things, Daxton has discovered the world is much more awesome when he looks at it propped up on his elbows. There are apparently many things that can only be seen from three inches up... He's continuing to work on sitting up, but still thinks rolling over is a ridiculous waste of time... Not sure where he gets this stubborn streak from...

His PT came to see him this week after a two-week vacation and was very happy with his progress even though he tried to be lazy... He forgot Yum-Yum doesn't allow lazy! And his early intervention therapist continues to be amazed by him... She says she sees new big things every week, and she just wants to take him out for show and tell... Ooooof course she does. He's pretty awesome.

As far as me and Mr. Peanut, or The Fetus Formerly Known As Sheniqua, I saw my OB today and I passed my exam with flying colors. He thinks the bleeding I had last weekend was not a sign of something major, probably just a bit of the placenta moving to the edge of the cervix, and that is not major or dangerous. He continued to reiterate that this is a normal problem, and that he is positive this pregnancy will be a normal one, but he has made the high risk referral for me so we can try to be extra sure. I'll follow up with high risk on the 19th...

While he was poking around I told him the ultrasound from the weekend looked an awful lot like a boy... and he goes on to tell me how it's too early to tell and you can't be sure this early yadda yadda yadda... So I pulled out the "smoking gun" picture, and he looked at it for a minute, looked back at me, and said, "I'll be d#%!@, that's a boy." He'll soon learn too, as many have before him, that I AM ALMOST ALWAYS RIGHT. It's a gift, and a curse... (Just ask my husband :)

And, I am very excited to report, despite all the fruit roll ups, popsickles, slushies, french fries, rice crispy treats, ice cream, cheeseburgers, milk shakes, and mashed potatoes, I only put on 2 lbs this month. I'm afraid 1 lb of that went north of my tummy, and the other lb went south of it, but that's not really that important, right?

And just to update on our buddies, Kinsley is home and doing great... Prayers of thanks for that! Baby Payton had to go back on the vent a few days ago for a bit of a vacation, as she was just wearing out too much on the cannula. Please pray she can get her strength back and build up those lungs once more. Please also pray for guidance for the docs as they choose her course of treatment.

Kinsley's mom and I went to Baby Drayke's memorial service and it was beautiful, and served as a harsh reminder for me of how precious and delicate life really is... We take so much for granted... If you take nothing else from his story, please hug your kids a little tighter, and tell them you love them one extra time...

And, finally, Kimberly is finally home after a week in the hospital and a week in inpatient therapy to work on getting some normalcy back. She's still exhibiting some cognitive issues, but luckily they are improving slowly. Her dad did finally tell her that Rob died, and then we spent about 3 days helpng her rehash and mourn each time she forgot, and then remembered again. It was a heart-wreching experience for all of us, and I can't even imagine what it was like for Kimberly. Her memory is steadily improving, though, and we're hoping she'll eventually be back to her old self again, minus one nasty aneurism... Please continue to keep her in your prayers.

Oh, and on a happier note, we put in a bid on an awesome house this week, and the family accepted our offer. We have to wait to see if their bank will accept the deal though, because the house is a short sale and the family is very close to foreclosing... So keep your fingers crossed! Of all the many, many, many houses we've looked through, this is the house that made Shep and I feel all warm and fuzzy inside... I'm sure we won't feel that way once we start paying the mortgage or the electric bill, but I'll conveniently brush that aside for now...

So off to bed now. We love you all and thanks again for everything. Hope you have a great weekend!

Sunday, February 1, 2009

A special day...

Okay, so nothing super-exciting for the average person here today... But we had to share something super-exciting for us. It was a fairly warm day here today, so guess who got to go out in the sunshine and sit in the grass for the first time??? This is Daxton's first time to go outside and sit in the sun since his due date party on July 27, and only his second time EVER. (Thanks again for the due date party, Dr. H!) He loved it! Notice him checking out the grass... This kid doesn't miss a thing! Love y'all!