whatsthenealio’s posterous

I love to wake up listening to the sounds of Micah playing in his bed.  Don't tell the American Pediatric Association, but we put stuff in there besides just the baby.  Micah always sleeps with a myriad of toys and books and loveys.  There is always, always a fabric book, a baby board book, Llama, his Monkey that my brother got for him when Micah was just 10 weeks old and so tiny, Uga from Jared's brother and another gift when Micah was still in NICU, Big Lovey (thanks, Ms. Becky Clement!), and at least one -- but usually all three -- mini loveys.  It sounds like a lot, I guess, now that it's all written out, but it's our system and it works wonderfully. 
 
This morning was one of those when Micah woke up, rolled over and met a Friend, and played and talked and sang.  It's delightful.  If it were at all possible, I would bottle up the joy of hearing him playing so sweetly and sprinkle it over the roughest parts of our world, thereby ensuring World Peace.  I'm telling you, it would work! 
 
When I got up to get Micah out of bed, he looked up from his Friends and grinned so huge that I swear to you I felt my heart swell.  Another magical part of every morning, even the ones when Micah wakes up sad or grumpy, is the morning hug complete with hug grunts, which Micah learned a couple of weeks ago.  Adorable! 
 
We carried on with our normal routine: scoop up baby, get hugs (with sweet, tiny grunts), change stinky pants (hmm, not too stinky today!), say good morning to Daddy, jump on Daddy, pull Daddy's hair, kiss Daddy, jump on Daddy, play in the living room for a few minutes until Breakfast.  Normal.  We did all of that today.  And, we did a little more. 
 
You see, my kid knows how to get out of diapers.  And, I know that.  I also know about the rule to always keep some sort of bottoms on him like a snapping onesie or pants.  I know because I made the rule!  But, this morning I let Micah wander around in his diaper.  When I looked down at him, where he was sitting at my feet, I saw that he was butt-naked!  I laughed a little because that's just cute!  I stopped when I saw the diaper covered in poo, the pile of poo beside the diaper, and the poo smeared all over the floor, some nearby cords, the TV table, laptop, Micah and his helmet, and me!  Aahhhh!  Luckily, Jared was still here and we scrubbed it up with a homemade remedy for such things that we learned by having inside dogs: vinegar, warm water, and a little dish soap.  It worked like magic, but it took both of us scrubbing to get it all up.  Micah was thrilled because it meant he got to have a bath again, even though he'd just had one last night!  Sweet deal for Micah! 

Our kid is so smart.  Either he now knows how to read calendars or he has a stellar internal clock.  On Micah's due date, Sept. 18, he was officially, technically one year old.  And, on that day, he walked across the living room.  He hasn't stopped since.  He is completely capable of following us wherever we go.  He can walk and turn and keep walking.  New this week, he doesn't need to pull up on anything; he can stand independently.  All babies can do this, so it's no big deal normally.  But, preemies tend to have very weak core strength because of lying about so much.  We've really worked with Micah to strengthen his back and abdominal muscles and it has really paid off!  At his last therapy appointment, Micah performed every task appropriately for his corrected age and a lot of tasks at his actual age, which means he's behaving and learning very normally.  Additionally, Micah can no longer receive therapy in our normal therapy room.  I didn't know it, but we were in the "baby room."  Because of Micah's progress, we now exercise in the "toddler room."  Micah practiced going up and down stairs while crawling and walking.  He's such a fast learner!  He needs extra encouragement to go down.  Up is so much more fun. 

  A little not-so-good news:  I'm pretty sure that Micah's reflux is back.  So, I'll be calling his GI soon to discuss it.  We noticed that Micah had a little cough and nasal congestion.  When you've experienced as much as we have, you know the difference between reflux and a cold.  This is not a cold.  And, when I dose Micah with Zantac he stops coughing and eats better.  Ta da.  It's no big deal, really, since it's easily fixed and doesn't seem to be bothering Micah too badly.

  Micah is finally getting some teeth in.  He now has 4 teeth on the bottom.  On the top, however, he has just the two teeth.  Not those two.  No.  He didn't get is front two teeth.  He got his left front tooth and the one to the left of it.  When he grins really big he looks like a hick.  It's adorable for now, but we're going to want that other front tooth to come in pretty soon.  The intense teething is also resulting in a decrease in food volume.  Micah still wants to eat, but he'd rather munch on his crunchy snacks than eat actual baby food.  His bottle intake is still very good and he'll often substitute a bottle for spoon food right now.  I think it feels good to chew on the bottle when he's teething.  Yes, Micah can take a sippy cup.  However, for now, he only likes ice water.  He won't be drinking out of a bottle when he's three.  I promise.  But, because he never learned to suck very well, sippy cups and straws are a little tricky and a lot of work. 

  Micah is learning some words and is beginning to understand more of what we say.  He can say Mama and Dada and says them a lot!  This morning we practiced "light," and Micah said "lu, lu, lu."   He's also said "boo!" when we're playing which is hilarious! 

  Bless his sweet heart he's napping right now and has napped long enough for me to shower, unload and reload the dishwasher and blog.  What a good baby!
-Heather

   

Click here to download:

Busy_busy_boy.zip (1912 KB)

Micah turned 15 months old yesterday and today we are approximately 8 days from his original due date, which would make him one year old in "corrected time."  Corrected time is the kind of age we'll have to keep up with for at least another year.  At 2 years of age, most doctors and therapists expect to see that most kids are caught up in size and development to at least 25% of their peers.  Micah, as you know, is doing GREAT developmentally.  We're practicing more words, especially Parts of the Body, and getting Micah to take more independent steps.  However, Micah is still freakishly small.  That's the diagnostic term that our pediatrician and I use when referring to Micah, freakishly.  Don't get flustered.  It's a very loving term the way we say it.

  At the 15-month check-up today, Micah performed very, very well.  He's a big fan of going to the doctor because he gets to be the center of attention every time someone walks into the room!  Basically, it totally rocks to be Micah Neal.  And, Micah's pediatrician is a big fan of him.  The summation of the report today was, "except for that being small thing and the plagiocephaly, he's normal."  Wahoo!  My kid is normal!  It thrills me to my core to hear our doctors and therapists say that!  Really, all parents want and even believe their kids to be exceptional.  But, all we've been shooting for these past 15 months is "normal."  Now, of course, we know that Micah is in reality exceptional, without question.  The fact that he is normal developmentally is ridiculously exceptional.  Dr. Leonard marveled over and over again today at how small Micah started out.  He is -- by far -- her smallest birth weight baby ever.  Dr. Leonard praised the miracles of Micah's lack of CP or brain bleeds or any other dozens of problems we could be experiencing right now.  There is no reason for Micah to be this healthy except that he was born at the best possible facility with the best staff available to fight with him for his very life and because of your generous spirits continually lifting him up in prayer to the Great Physician.  Dr. Leonard's last words at our visit were "14 ounces."

  The facts are these:
At 15 months old, Micah weighs 15.5 lbs and is 28 1/4 inches long, an improvement of only 4 ounces but 1 1/2 inches since his check-up three months ago.  That's not nearly enough weight gain, but we load him up as best we can.  Micah eats 16 oz of high-calorie baby food and 15 oz of (amplified) formula each day.  He just won't sit still or sleep long enough to allow any of the calories to stick!  We're working with a nutritionist (and have GI on standby), but Micah started out very small (Ha!) and has had issues with weight gain since he lived in my belly.  Dr. Leonard's final assessment was, "He's going to be small.  Really small.  This might just be the best we can do [to help him gain weight]."  Okay.  We're good with that.

  Micah's plagiocephaly (malformed head due to laying in hospital) is a 7 on a scale where 6 is the highest acceptable number.  His head has grown by 1/2 cm in the last three months, causing there to be very little change in the shape of his head.  This odd shape is mostly noticeable from behind and even then you have to know what you're looking for. 

  Micah no longer sees a cardiologist because the two holes in his heart closed on their own without medical persuasion.  Micah has a pulmonologist and gastroenterologist on standby, but no longer has scheduled appointments with either of them.  Micah has an endocrinologist who monitors his thyroid levels and the dose of his medication for hypothyroidism, a symptom of his prematurity.  His dose of Synthroid hasn't changed since he was first diagnosed at 3 months old.  (Good job, thyroid.)  Micah's appointments with the physical and speech therapists continue at only once monthly visits to monitor his progress and keep him on track developmentally. 

  In 15 months, Micah has had 2 colds.  The first one lasted 2.5 days.  It almost killed me.  The second one lasted 8 days and I survived quite nicely, don't ya think?

  Micah is not without issues still, but is far healthier than a 14 oz, 15 weeks early preemie should be!  Later this month we're going back to the eye doctor to check on the status of Micah's ROP (retinopathy of prematurity) and his overall vision.  We're anticipating a prescription for glasses at that visit. 

  Now everyone has Micah's medical history and can be as impressed with our "magic baby" as we are. 

I can't get the dishes unloaded from the machine unless Micah is out of the room.  It's very difficult to achieve.  As soon as he hears dishes rattling or the door to the machine open, he dashes right into our little kitchen to get in the middle of it all.  So, he has very seldom seen me open the stove drawer to put things in or out of it, but he's seen it enough to know that it is a cool, apparently secret, hiding place for Mommy's kitchen stuff.  Last night, while I was watching TV and Jared was on the computer, Micah roamed freely in our living area playing with whatever he found until bedtime.  We heard a loud clang in the kitchen and knew immediately what it was:

When I was thinking about some more photos that I needed to add to our blog, I remembered that I didn't even tell everyone about our first trip to the zoo and to the park in the same weekend!  We Neals live a wild, wild life! 
 
We're trying to socialize as much as possible before this dreadful Lockdown begins.  I am an extrovert and Jared is an introvert, but he is near the middle of the report and can't handle being shut in the apartment much more than I can.  Within two days of staying inside, Micah is going berzurk and having fits of boredom.  Apparently, Micah is also an extrovert.  Those of you who know him will agree. 
 
So, off we went to the zoo*, knowing full-well that Micah wouldn't really get it.  His eye sight is poor and he has no perspective for what the zoo should be like or what he should look for.  Thus, he didn't really see many animals, but LOVED looking at all of the people, especially the other kids who were running around.  The zebras and giraffes were out nicely and Micah actually watched them for a little while.  And, there is a particular critter house that I found... well, gross.  Not the reptile house.  No, that I can deal with.  Everyone is always tucked securely away there.  We went through a bird house the size of a tall, two-car garage filled with 500 parakeets and ducks.  I saw 3 ducks.  There were hundreds of nasty little pooping birds everywhere.  I think Micah didn't really know what to do with that.  Thankfully, we made it through without getting pooped on at all -- no small miracle, let me tell you.  They had signs everywhere that read, "Poop Happens!"  Jared and I, with our friends the Smiths who were in town for the weekend, got to show Micah animals and people and have a great time together.  When we go again next summer, it will be a very different experience.  I can't even imagine the difference in taking a 1 year old and a two year old to the zoo!
 
At the park*, Micah rode in a swing and I went down the slide with him and he bounced on one of those spring-loaded animals and pulled up grass (sorry, City of Atlanta).  We met some of our old college friends there and played together with all of our kids.  It's the first time we've done anything like that.  And, while Micah was too small for almost everything, it was wonderful to share fun times with our friends and their families and to imagine Micah playing there when he's bigger. 
 
*In these photos, please note how very open I was and let Micah touch loads of gross stuff.  Yes, I'm so brave.

           

Click here to download:

First_Zoo_and_Park_Visits.zip (6383 KB)

We met with the pulmonologist today for a check-up on Micah's respiratory health and lockdown prognosis.  Because absolutely everything in the body is connected to everything else, Micah gets a pretty thorough check-up wherever he goes. 

  Since it's always the "big issue," we discussed Micah's growth.  The pulmonologist was pleased with Micah's improvement in size since our last visit in March.  But, he wants Micah to be bigger (so, there's another player on the nutritionist's team) -- his goal for Micah is to be on the charts for his actual age by his second birthday.  After asking how tall Micah's daddy is, he settled for the 5th percentile!  Ha!  (See, that's funny because Jared is a short 5'5".)  He also posited an interesting theory that Micah may be slow to gain weight not just because he's crazy-active but because he may be using more energy just to breathe.  Because he was so premature and needed breathing support, Micah's lungs are small, premature, and damaged -- not what you'd call the best combination.  After a thousand questions, the pulmonologist listened to Micah's lungs and said, "Huh." (a positive "huh") and kept listening up and down around Micah's chest and back.  Then he said, "He sounds good.  He's actually breathing easily."  TA DA!  HA, HA, HA!!  Take that!  Yeee-ah!  We have really worked hard at keeping Micah away from cooties.  Ask any number of friends at church who have been told a little too curtly that "you're dirty" or a simple, firm "nope" as they reach for my buddy.  We've had only one cold to deal with, which was last February, and for two nights, I stayed up with Micah.  That's it.  Don't get me wrong; I cried and was terrified and exhausted.  But, it wasn't nearly as bad as I had anticipated.  For all of our hard work, Micah's doing pretty darn fabulous right now. 

  Nevertheless, he is still a child of damaged, premature lungs and we're back on lockdown this RSV (respiratory syncytial virus - google that) from October thru April, but we're free to do anything outside that we want to do and I can continue taking Micah to the grocery store and Target as long as I continue to sanitize the buggy and not let him touch anything or anyone while we're there.  Yes, it's possible.

  (It was a long appointment) We learned all about the flu vaccines Micah needs this year (in October, as I understand it).  Instead of two flu shots like last year, this year Micah will get the one standard flu shot (and Mommy and Daddy will, too) AND he'll get the H1N1 (swine flu) vaccine.  Micah's pediatrician is at a significant practice near Scottish Rite and Northside hospitals and a large number of the partners there are infectious disease specialists.  Since Micah is a priority for the shots, I have no worries that he'll get what he needs.  Bonus, we have a back-up: in the event that there is some delay and/ or lack of vaccines at our pediatrician, we can simply call up our pulmonologist for whatever we need. 

  In the next couple of weeks Micah will go to the pediatrician for his 15-month check-up (and get more vaccines there).*  I'll be talking with the pediatrician about Micah's growth and development and see if she has the same opinion as the nutritionist.  So far, she's been very pleased --impressed, even -- with Micah's progress.  Fingers-crossed, she'll agree with Micah's parents that he's doing all he can do and we are, too, and things will have to work themselves out.  I simply can't make the kid gain weight.  I have no control over that.

  *For anyone who may be tempted to shame us or give us two cents on your vaccine-autism theories, don't.  We are aware that it sounds like a lot, but we've got this covered.  We're fine here, thoroughly read-up and satisfied and guarded by fabulous medical professionals on every side.  Thanks for the concern.

Micah had another checkup for his helmet today and we are stuck with it for another 6 weeks.  There are several numbers and ratios and measurements related to his progress in the helmet.  The primary number we're looking for is something less than 6; the number started at 9.9, severe, and is currently 7, moderate, and refers to the disproportionate bulge on the (primarily) back left side and coordinating lack of roundness on the back right side of Micah's head all due to the long-term laying in hospital.  Overall, Micah's head roundness is proportionate to a "normal" baby's, which makes us very happy.  Babies typically have about a year to correct plagiocephaly, a misshapen head, like this.  Because Micah was freakishly premature, we get a little more time, a grace period, if you will, to allow his head to continue to reshape.  Truthfully, if we'd leave the helmet on him for 23 hours a day like we're supposed to, we'd be done with the thing by now.  But, during the hot summer, I leave it off most days and only make him wear it to bed, which is when it's most effective.  Your mother was right:  sleep does make you grow big [and strong]. 
 
We've seen a marked improvement in Micah's eating, up to 4 jars of food a day, everyday, and his bottle feeding has improved.  Now, Micah takes a couple of bottles during the day because he wants them, and is eating more volume in each bottle by .5 - 1 oz each.  It adds up!  So, we're now seeing the speech therapist every other week and soon will see her only once a month until we need actual speech help.  She tested Micah last week and he is on target for his corrected (due date) age for language skills, which we are more than pleased with!  We learned that because preemies are exposed to so many sounds that mean nothing to them, language can be difficult to pick up on, so it is usually delayed.  Plus, Micah couldn't hear for a few months there until we got the tubes in his ears, so we figure that if he's testing at 10 months, then he's a little ahead of the game afterall!
 
New to Micah's vocabulary and firmly established therein is "Dada."  Micah knows who that means and what it means when he says it and when he says it, he wants it.  It's terribly endearing.  He also says "Mama," but lately it's just when he's yelling at me for putting him into the car seat.  Sigh. 
 
The biggest news of the night and possibly of the whole year:
 
Micah took his first steps today.  Yes, he did!  We went to church tonight and after prayer time, Jared was talking in the sanctuary with a colleague from work.  So, I put Micah in the floor to put on his helmet (like a good mommy) and that baby crawled straight away to Jim, his Pops.  Since Jared was talking away, we were in no hurry and Jim and I played with Micah.  We had him walk between us and let go of his hands.  He thought it was so funny that he just jumped around and would plop down to crawl or even stand for a few seconds before sitting calmly and laughing out loud.  It was so much fun!  In our play, Micah took two whole steps toward Pops -- that's right, away from Mommy and toward Pops -- before stumbling excitedly into Jim's ready hands.  Fortunately, Jared was watching and saw it, too.  Micah isn't exactly running in circles around me, but he's getting there! 
 
For the record, Micah is beginning to walk well before his due date, which was Sept. 18.  I'm so proud I could burst and so relieved that have cried.  He is a miracle everyday and I never stop remembering just how far he has come in such a short amount of time.  I can't thank all of you enough for your compassionate prayers and loving support our Sweet Micah and his family.
 
 

     

Click here to download:

My_First_Blog_Post.zip (2910 KB)

Seriously.  How great is this?!

Today we went to the orthotics and prosthetics department of Scottish Rite because Micah's whole head was red when I took off his helmet yesterday.  It was obviously time to adjust the helmet again.  Micah has been eating well (except on his formula, but he is improving there) and is due for the standard issue 9 month growth spurt.  Well, I believe it may have arrived! 

  Our orthotist, Ed, said for us to come back in 2 weeks for another cranial scan.  He said, "I'm pretty sure it will be the graduation scan."  What a funny way to say that we'll be done with the helmet!  Micah is getting too old for the helmet.  That means that he knows exactly what the helmet is, where it is, and is trying to push it off, which results in the helmet getting shoved out of place.  This rubs his head and makes the helmet less effective.  So, ready or not, Micah is about to be done with the helmet.  At our last scan a couple of weeks ago Micah's head hadn't grown enough to effect change.  Remember, the helmet isn't like braces.  It doesn't correct what's gone wrong, it allows for improvement in the places that had gotten flat.  For the previous 6 weeks, Micah's head grew less than 2mm, so his head couldn't correctly grow because it didn't grow at all. 

  Over the last 14 weeks this helmet has gotten terribly stinky!  Imagine a gym sock, left in the bottom of a gym bag inside of a plastic grocery sack by a 14 year old soccer player for about 4.5 months!  Eewww.  Seriously.  It's nasty.  Micah's head smells like that until it airs out for a little while.  I'll be very glad to be done with it.

  In other news, Micah is learning to walk.  It's amazing.  That word is so not-enough.  It's incredible to see him progress and be proud of himself for learning new things.  He can reach into his toy bin and pick out the toys he wants to play with... or the toys he just doesn't want to be stuck in the awful box anymore! 

  He has opinions and desires that are all his own and he's beginning to get very frustrated in the way that toddlers do when he can't communicate effectively what he needs.  He threw his first tantrum.  It was , of course, related to not being allowed to chew on a cord. He's bananas for cords!  (That's not good.)  In this tantrum, Micah yelled at me.  He yelled at me in the way that if he had been a teenager using his words, I would have grounded him for 2 weeks!  When I scooped him up to cuddle him, he threw-out and wouldn't be held. 

  A couple of weeks ago, for the first time, he opened a cabinet door and pulled out a plastic pitcher.  Micah now has a designated cabinet that is safe for him to play in.

     

Click here to download:

Helmet_Days_of_Summer.zip (3166 KB)

This year for Independence Day, we stayed in and jubilantly relished the freedom to recline peacefully at home.  On July 3, we went to Lake Arrowhead and had barbeque and watched fireworks with friends.  Micah, bless his exhausted self, stayed up and watched the fireworks, too.  Since he didn't say much, I can only assume that he was in awe.  We were just glad he wasn't one of those shrieking, terrified kids.  We'll see how he does next year.
 
One year ago, on Independence Day, we sat in NICU C-Pod with a great window view -- that we couldn't have cared less about -- and watched our 3 1/2 week old baby struggle for his life.    It was also the very first time that I got to hold Micah.  We didn't realize it, but nearly everyday, and often a couple of times a day if they spilled Micah's blood, the nurses changed Micah's bedding.  In doing so, someone has to carefully hold up the baby and his breathing tube and, at the time, 5 IV lines.  Last year, on July 4, I got to be the one to hold Micah up while his dirty blankets were scooted out and the new, clean nest was put into place.  It lasted perhaps one full minute.  It was incredible.  To that point, we'd been allowed to place our hands around Micah's head and feet while he was having a particularly difficult or easy time.  If he was very stressed, our hands comforted.  If he was restful, our hands celebrated.  In his fragile state, our hands could be painful to him at the slightest touch.  But, when his bed needed to be changed, someone had to hold him.  I can't tell you the joy we had!  The next night Jared got to hold Micah in the same way.  It wasn't the same as clutching him to my chest and smelling the sweet baby smell of his head.  That day, to hold him at all, was immeasurably blissful.
 
The following Monday, July 7, 2008, a nurse let me take Micah out of his incubator, wrapped in numerous blankets, and hold him like a real baby... a real, really tiny baby.  I called Jared at work and said "Everything's okay.  How soon can you get here?  They're going to let me hold him!"  Shortly after 2pm, Micah was out and in my arms and we had our first family photo. 
 
That night -- no the next morning at 5 am on July 8, Micah self-extubated and never went back on the ventilator!  Micah was just 4 weeks old.  And he was already the strongest person I knew.

     

Click here to download:

Independece_Day.zip (1305 KB)