Mini ME this time!

Long, long ago, during my pregnancy that seems from a different lifetime, there was one particular 4D ultrasound that cemented in my mind that Parker would be yet another carbon copy of my husband.  It would be physically impossible for Jeremiah to look more like Mike--

Exhibit A:

Mike at 4

Jeremiah at almost 4

Because Parker's ultrasound picture looked SO MUCH like Jeremiah did as a baby, I just figured he would be another MiniMike... That would be fine with me, 'cause I think my husband is a handsome sort of fellow.

However, as soon as Parker began opening his eyes, the consensus has been that he looks like me, who in turn look like my dad.  I've seen flickers of it here and there, but it wasn't until I was at my grandmother's house for lunch today that it hit me-- Parker is MY MiniMe! 

Abby at 4 months

Parker at 4 months (I wish I had a better angle to compare!)

If we were to put Parker in a pink smocked dress, I think we'd have a match.  I am tickled to death by this news. 

Other developments around here include the kicking to the curb of the SmartMonitor (a Velcro chest strap with 2 electrodes that monitor his breathing and his heart rate).  It was only prescribed because he was on the NG tube, as a precaution in case the tube somehow made its way into the lungs. We long ago decided, after the tube was gone, to only use it at night, which has been tremendously comforting.  It has only gone off twice, and both of those were due to us misplacing the leads.  After 5 weeks at home without incident, we finally felt confident enough to try a night without it. 

Parker had moved out of our room and into his nursery a few weeks ago, so we were doubly nervous to try him off the monitor while he was two rooms away.  We have a regular monitor, but it most certainly doesn't give any indication as to whether he is breathing or not.  Sunday, we gave ourselves a big old pep talk, gave him his night night bottle, had a story and prayers, and left.  I stayed up for his midnight dream feed, checking on him a hundred times a minute.  After that, I attempted sleep until Mike got up at 4 to go to work.  Before I knew it, the sun was shining and the first night was over. 

A pictorial representation of Abby's Night:

*repeat 800 more times*

We are now on night three, and I have actually managed to sleep with only one eye and one ear open.  I've shopped the AngelCare monitors, which I used to dismiss as a sign of overanxious parenting.  I am now President of the Overanxious Parent club and retract all former statements!!

We are off to enjoy this week-- our first week ever of no doctor's appointments!  He did so well with weight gain that we can cut back to twice monthly weigh ins.  Hooray!  Our next appointments are a weight check next week and a follow up with the GI the following Monday.  After that, we enter our den for a winter of hibernation.  I feel like I should be gathering acorns. More on that later.

Numbers

Numbers numbers, everywhere this week.

Parker had his 4 month appointment on Thursday, which was great.  All is as it should be-- 27 inches long and 16 lbs 4 oz.  That puts him in the 95+ percentile for length and the 60th percentile for weight.  Big boy!!  He's actually BIGGER than Jeremiah was at four months-- half an inch longer and TWO POUNDS heavier.  NICU baby?  What????

Speaking of...  so many things have come to light this week regarding Parker's hospital stay.  As we start to sift through all the paperwork and specialist reports from Parker's doctors, all kinds of news is emerging.  For instance, I didn't know until I read his discharge summary that the cord was wrapped around his neck when he was born (didn't make one bit of difference as I never went into labor).  Nor did I know that Parker's veins failed the night after he came off ECMO and now his jugular is in several pieces.  There are many things in his records that I either a) didn't know, b) knew but forgot, or c) didn't fully understand until now.  All of them are really rather insignificant in the grand scheme of things, but fascinating nonetheless.  Reading the narrative of his stay makes me physically sick to my stomach.  It's easy for me to forget how much that little booger went through.  How much we ALL went through, I guess. 

The most interesting piece of information popped up on his swallow study paperwork-- it was the first time I ever saw the severity of his hernia quantified.  We heard "significant" and "severe" throughout pregnancy, and on the day of his surgery it was "worse than expected."  Turns out that Parker had only 25% of his diaphragm.  I was floored.  We always thought eh-- maybe half at the worst.  For him to be missing three-quarters of it and to have come out this well on the other side is nothing short of astounding.  Look at this picture.

He had ONE QUARTER of that.  (Am I weird because anatomy graphics make me weepy?  Probably.  I know I am mental when, whilst enjoying one of my favorite web pages EVER, I saw this and my first thought was, not "Dear heavenly Lord help us!" but, "Oh look!  A CDH cake!"  Get a grip, Abs.)

In other news-

The final tally for the 90 days we were there came to $850,000 *excuse me while I vomit on my shoes*.  Given the amount of extra testing and specialist visits we will be making during this first year, not to mention the Synagis shots that start next month, it is entirely possible that we will far surpass the million mark in our first year.

It's funny, because our deductible rolled over July 1st, right smack dab in the middle of our stay, and I got our first bill that we have to pay any part of today.  I actually had the nerve to be upset about having to pay it, and then I realized that Cigna has paid 2500 times more than that and I moved on right quick.  Smooches, insurance company!!  Seriously, they have been an absolute dream during this whole debacle.  I do not often have pleasant things to say about insurance companies, but throughout my pregnancy (another $60k) and Parker's ordeals, they have been wonderful. 
I could take this opportunity to go off on a tangent about healthcare, but instead I will just say

BEST ALMOST MILLION DOLLARS EVER.

Big Stuff Around Here

Sunday, we celebrated the one month anniversary of our NICU Jailbreak.

 Seems like a lifetime ago!

 Monday, we celebrated Jeremiah being this week's line-leader... he got to bring Froggy home to snuggle with and to read about, PLUS he got to take his favorite book (currently Twiddlebugs Go To Work) to share with the class.

 

He was SO PROUD.

Tuesday, we celebrated Parker's four month birthday.

"Morning by morning new mercies I see,
 All I have needed thy had hath provided, 

Great is thy faithfulness, Lord unto me."

Today we had MUCH to celebrate--
Red Day at preschool, to which Jeremiah wore his personalized SpiderBoy t-shirt and took his Braves tomahawk for show and tell.

He came home dressed as Clifford.  Adorbs.

 

After a quick wardrobe change, we set off for our favorite place-- KRISPY KREME!  In honor of Talk Like A Pirate Day, anyone who ordered a donut in pirate speak got it for free, and anyone dressed like a pirate got a dozen for free.  We recycled Jeremiah's Captain Hook costume that I made him for Halloween last year-- it is on its last legs, as it has been well loved.  What good is the old captain without his trusty sidekick, Mr. Smee?

**insert hastily thrown together conglomeration from depths of baby closet**

 

Never have there been more adorable buccaneers.

I mean, seriously.

Fancy Pants

I might have purchased some ridiculously overpriced teenager jeans.

They might be my new favorite thing EVER.

All of this was precipitated by the realization that I have exactly one pair of pants that fit, and those are my maternity jeans.  Unacceptable. 

I have never in my life been that girl that people think, "Woowoo, look at her hot little body!" I peaked in fourth grade ballet when I had the most gorgeous legs ever, and it's been downhill ever since.  I'm now a 31 year old mom of two, and the old grey mare ain't what she used to be, that's for sure.  Best pin ever:

It's never been enough to bother me, and I like eating way more than I like skinny. Still, I've embarked upon a quest to get back to where I was before I got pregnant with Parker- when I was running half marathons.  It's a long road, and I'm not going to get back into my half-marathon-running jeans before the jeans season goes by.  Thus, new pants were in order.

I went to every bleeding store and very nearly broke down into tears on several occasions.  Jeans have ALWAYS been a struggle for me (I am the living embodiment of that old bard Sir-Mix-A-Lot's description:  little in the middle but I got MUCH back... Though the "little in the middle" ain't so little anymore. Working on it!!!)

Anyone who knows me at all knows that I have glitter running through my veins.  Rarely do I leave the house without something sparkly on.  I have seen people (mostly 82 pound teenagers) traipsing about in sparkly bottomed jeans, which piqued my interest.  I stalked them online.  I found them at Macy's but stomped away due to StickBarbie next to me saying, "Darn.  These 24 inch waist ones are just too big!"  I talked myself out of it for THREE WEEKS.

Then I hit paydirt-- in my online stalking I saw "Miss Me Curvy Fit".  Curvy?  I AM SUCH!  Another week of online stalking.  That cut is only available at one store, which is at my local mall.  Wringing of hands.  Consideration of ordering online but balk at shipping charge.  Convince self that spending such an amount is sheer madness.

Finally, I built up my courage, loaded up the Sit N Stand, and headed over there.  My plan was to sneak in, grab the biggest size I could find, buy them, and run away.  Tragically, heading into an empty store in the middle of a school day with a gigantic double stroller does not allow you to blend into the scenery.  I was approached by a young man who could not have been more than 20.

"Hello, ma'am!" (aaaaaaaaaand there went my last shred of bravery) "I see you are looking at the Miss Mes.  Can I help fit you?"

I wish I could adequately describe the inner monologue I had at that moment. 

Hives.  Sweaty armpits.

"Um... no, thank you.  I know my size."  LIES!  Sneakily grab biggest pants and inch toward dressing room.

"Yeah, lemme grab a few pairs for you to try on that i think will work."  Does not ask what size.  Grabs on his own accord.  Grabs several SEVERAL sizes below biggest ones I had snatched.  I say nothing and plan to put on large pants and get the hades out of there.

"Okay, ma'am, let me put you in our big room.  Are you going to try those on too?"  Blast.  He has spotted the ones I chose.

Mumble.  Stumble towards dressing room.  Crash stroller into rolling racks.  Enter dressing room, strip in record time and shimmy into my selected pants.

Sweet voice of my 3 year old, in loudest possible tone:  "Mommy, those pants look wrinkly on you."

After whispering thinly veiled threats if he spoke another word, I noticed in the mirror that he was right.  They were too big. Much much too big.  Hmmm.

I stared quite doubtfully at the tiny pants the 20 year old had selected.  I picked them up and held them up to me.  I put them down.  Repeat. I finally dared to put them on, and the heavens opened and the angels sang.

After trying 120 pairs of jeans, the first ones that fit were selected by a teenage boy. (Okay maybe he was older than that but not in the mindset I was in that day!)  The only problem was that they were too short.  I emerged from the dressing room to find him waiting for me.  Smirking.

"So how'd those fit?"  He already knew.  Stinker.

He got me the same pants, just longer, and I got the heck out of there.  I stopped off at Macy's to change out of my maternity jeans and into my new Fancy Pants for the rest of the day.

Lessons Learned:
1) "Premium denim" is stupidly expensive, but sometimes, SOMETIMES, they really do fit better.  Or fit at all, in my case.
2)  Sparkly  pockets put some pep in your step.
3)  Teenage boys can guess your pants size just by looking at you.  I can't decide if this is appalling information or not.
4)  We do not appear as large to others as we do in our own eyes.  I can say with certainty this is not appalling information.

We went to a potluck dinner yesterday with some old middle school/high school drumline friends of mine.  We laughed that we are all grown up and growing families of our own, we reminisced, and we looked at pictures from days gone by.  There I was, a much smaller shadow of  my current self, but I cared not.  I sashayed about in my overpriced teenager jeans and thoroughly enjoyed myself.

Fancy pants will do that to you. :-)

Chunky.

That right there is a word that could describe two things currently in my house.  (um, actually three, but that's tomorrow's post):

Exhibit A:  This guy.

Exhibit B:  This creepy goo filled bottle.

We had Parker's swallow study done Thursday morning, which meant a trip back to Egleston.  We are coming up soon on a month since we left there, and I can say with 100% certainty that I haven't missed it. The people, yes. The building?  The gut-grabbing fear?  THE PARKING DECK?  No.

The study itself was quite fascinating-- they put Parker in a little purple roller-coaster-looking chair  and rolled an x-ray machine right up to his right side. I stood next to him and fed him barium through one of his bottles from home.  The whole thing took 5 minutes, and I heard some mysterious terms being thrown around before our lovely SLP Kristin gave me the details.

(I'm going to screw this up. My dearest friend Ali, forgive me and correct me.  Penny, same thing and we are sorry that we missed you!)

Apparently, during such a procedure, they are watching how the baby swallows. They want to be sure that the baby is able to swallow effectively and efficiently.  There are two red flags that can show up-- "penetrations" and "aspirations".  When a  normal person swallows, his or her airway is protected by approximately fifty-eleven moving parts that keep food/liquid out and shove it towards the esophagus.  Penetrations happen when some liquid is allowed into the airway, stopping before reaching the vocal cords before being pulled back out.  Aspirations occur when the liquids actually go past the vocal cords, which means they are likely to enter the lungs.  Coughing.  Choking.  Pneumonia.  Bad news.

Parker was given "thin" barium first, and out of 30 swallows, several had penetrations (no aspirations).  Next, he was given a thicker barium, and out of 30 swallows with that he had significantly fewer and much shallower penetrations.

**I got to watch the video of this business happening, and let me just say it is FASCINATING to watch someone swallow. (some brave soul has put his swallow study on YouTube so you can see what I mean)  It was another one of those moments where I was struck by the wonder of our bodies.  So many tiny little systems that have to fire just right.**

It was determined that, though the penetrations with thin liquid were not too bad, it would be wise to move to thickened liquids for a few weeks before a repeat study in 6-8 weeks.  The underlying problem comes from Parker being intubated for so long, keeping a tube between his vocal cords and causing some irritation and damage.  They will heal up just fine, but the best thing to do is to exercise them. How?  Swallowing.

Parker eats with gusto, now that he eats.  Swallowing should not be a problem.  How do I know this?  HE GAINED AN ENTIRE POUND IN 8 DAYS.  Yep-- pediatrician visit on Friday showed "significant gain" and all thoughts of the NG tube are now behind us. The swallow study shows us he is eating safely, and the scale shows us he is eating well.  Hooray!

What is NOT hooray is this thickening business.  They gave me some free samples of "SimplyThick" gel to put in his milk, which comes in at a lovely price of $1.50 PER BOTTLE.  Times 6 bottles a day.  Times 30 days a month.  You do the math. What's that?  You want me to do it for you? GLADLY.  That's $270 a month, friends.  I'll do it if I have to, but not if there's an easier way!

 "The Thickening Gel You Can't Taste!" 

Calling shenanigans on that.  I tried it.

My alternative is to use rice cereal, which rings up a total of $0.09 per bottle.  That's $16 a month.  Yes please.  Not to mention, the SimplyThick just absolutely creeps me out.  Pouring it into the milk leaves this clear goopy pile of spaghetti looking stuff that floats in the milk, and even if you shake it for 10 minutes it never fully incorporates.  The rice cereal does just fine, so long as you use it immediately and don't let it sit for too long.  Can do.  I shall use your free samples and then buh-bye, creepy goo.

**shudder**

The happy news is that Parker is largely unfazed thus far.  He will guzzle the thickened milk just as happily as he was the thin.  I did back off on the thickening a bit today due to his poor little belly's inability to move that stuff through his system, and I will check with the pediatrician next week (at our 4 month well check. FOUR MONTHS!) about maybe mixing some juice in once a day to help shuffle things along.  The joys of parenting.

We are pleased with our 16 pound Chunk of Love's progress, and we are pleased that the NG tube seems to be but a distant memory. **knocking on all available wooden surfaces**

We did get to go back up to the NICU on Thursday and see some of our favorites (though many of our favorites were missing, too).  Parker was quite happy to see all his lady friends again and gave them some of his famous grins.  Mike and I were so excited to show him off and say, "LOOK!  No tubes!"  All the doctors and nurses were overjoyed to see him looking so well.

We were overjoyed to give them all lots of hugs and then get the heck out of there, escaping for lunch at Doc Chey's, one of our favorite hospital haunts in Decatur.

This picture tickles me.  Love my boys!

Big Boy

Jeremiah started school this week-- he is now going 3 days a week to 3-year-old preschool. He ADORES school, and I adore the environment (it's the preschool attached to our church).  Last year, he was one of the older kids in his class, a good head taller than everyone else, and the self-proclaimed leader of the pack.

This year, he is in with the "older threes" group, and I am excited to see how he does.  He had a wonderful first two days, has made lots of new friends already, and is happy to be back in the school routine.  He LOVES TO LEARN, has a pretty good sight word vocabulary, and is working hard to learn how to string letter sounds together to read words.   He amazes me each and every day- I am not sure how Mike and I, two socially awkward recluses, managed to create this confident, self-assured, precocious little man.

LOOK HOW MUCH HE GREW IN A YEAR!  I die.  Seriously.  Couldn't love him more.

In other news, briefly:
1) I cancelled Parker's pH probe test for this past week.  It was set up by the GI when he was still on a feeding tube as an attempt to determine why he wasn't eating orally.  Our pediatrician didn't really see a need for it now that he IS taking bottles, doesn't show much sign of pain, and is already on reflux meds.  I was afraid of the test itself-- it involves shoving another NG tube-type thing that measures if/when/how much Parker refluxes during a 24 hour period.  Mike and I were afraid that putting another tube in might lead to a backslide in the eating department, which we cannot afford. We have a swallow study this week, and I will ask if the GI wants to reschedule the pH probe.  I am hoping not!

2) Speaking of pediatricians-- Parker did not gain weight this week.  Hmph.  Dr. Putnam is not overly concerned about it as he has a good amount of weight on him already, plus he is starting to wiggle all around and burn some extra calories.  She wants to see some improvement this week.  My immediate response was for all the blood to drain out of my face before asking, "Does that wretched tube need to go back in?"
Her answer was that, for now and if need be, she can tamper with his calories in his fortified milk.  Needless to say, we have been shoving food at Parker all day every day to see is he is interested.  Sure enough, he must be in a growth spurt as he will happily eat anytime we offer.  COME ON WEIGHT GAIN!

3)  Jeremiah informed me this week-- "MOM! You are a GENIUS!"  Why?  Because I engineered him a pretty rad playhouse out of a giant FedEx box and rigged up some mood lighting.  He decorated the inside and outside with his crayons, and he spends most of every day in there.  It takes up most of my living room floor, but he is just so darn happy in there that I can't bear to ask him to move it!

4)  Such a fun weekend:  crafts (making lots of wreaths!), finally getting to get back to making ridiculous cakes for people I love (Happy 50th, Uncle Greg!), celebrating a milestone (Happy 40th Anniversary, Patti and Milton!), Hubs off of work, and a win for the Dawgs (even if it was ugly).

Nothing could make me happier than being piled up in my bed with my boys watching football.  Smiles all around, in between the shouting at the TV.

5) I get a thrill every time I get to put Jeremiah and Parker in matching/coordinating clothes.  I am SO that mom, and I am unashamed.  I don't do it every day, but definitely for church.  Here they are today in their shirts from Mrs. Joan. 

My heart is happy.

Little Bulldawgs

First things first--

Our appointments on Thursday were a great success- Parker managed to gain 3 ounces in 3 days between pediatrician visits, so she feels like we are pretty much in the clear.  We are continuing to fortify his milk, but we should be starting on solids within a month or so and might can cut back on that once the extra calories start pouring in.

The follow-up with the surgeon was happily uneventful-- he thinks everything looks great from his perspective.  He'd like us to get a chest x-ray done every 3 months for the first 2 years, with actual office checkups every 6 months.  He gave us some things to look out for as symptoms of reherniation, which is an increased risk with a patch, but he feels strongly that the double patch will hold.  Fingers crossed on that front!!

The rest of the weekend was spent being oh so joyful that college football started up. There is just no happier time in our house than fall, primarily for football reasons but also because I get to drag out all of my accumulated seasonal decor foolishness.  "Dust catchers" as my mom used to call them.  My new addiction to deco mesh wreaths will not help the situation!!

Friday was "College Colors Day," so I of course got my boys all dolled up in their red and black.  We stopped off for some school spirit cookies, and my little stinker JB decided he needed an Auburn cookie. 

????????????????????


 That's the one he chose out of the case, and as he nibbled it with glee, he said (and I quote), "When I eat this cookie, Mommy, my heart feels orange."

 

Whatevs, silly boy.  Mommy will sneak into your room and switch your Jake and the NeverLand Pirates CD for "Glory Glory" to fix this problem.  OH THAT'S RIGHT, Auburn liked our song so much that they chose to borrow it.  Perhaps therein lies the confusion. :-)

(seriously, if he had to choose an orange school, Auburn is the best choice.  I have some dearly beloved friends who are Auburn fans.  Bless their hearts.)

P-nut, on the other hand, is down with the Dawgs.  

Saturday morning, the first thing out of Jeremiah's mouth was "MOM!  I CAN WEAR MY HAIRY DAWG SUIT!"  I suppose the Auburn cookie's memory faded quickly- he was given this little fleece warmup suit by his Auntie Amberle months ago.  It has been waiting in his closet for Game Day, and his little brain has been counting the seconds.  90-degree weather doesn't matter too much when you're 3!

 

Love my little Dawgs.  Couldn't be happier to run around my house barking with these two.  Hooray for a win for the Dawgs, even if it was a lil' bit ugly.

I was quite proud of myself this weekend-- Mike went back to work after a 2-week haitus so it was just me and the boys.  We actually managed to make it up and about and be productive citizens.  I even made it to church on time Sunday morning!

I bought these linen shirts AGES ago, on a leap of faith that Parker would be home during the summer.  I figured it was now or never for linen tropical shirts and sandals!  No-post Labor Day faux pas! 

Sunday night, we met Mike for dinner at a fundraiser to support the Public Safety Foundation.  Someone paid for our meal, which was a tremendous surprise.  All in all, I'd say it was a good weekend.  

Happy Labor Day!!