whatsthenealio’s posterous

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.

     

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Independece_Day.zip (1305 KB)

For getting a whopping 6 hours of sleep (interrupted by a bottle feed, of course), I feel surprisingly rested.  Not refreshed, but rested. 
 
Bless this poor baby's spirit, he has a catheter in place from his hypospadias surgery.  We were certain that our boy, whom we love and is so strong, would pull this catheter right on out.  Our urologist said it was very unlikely and he'd had it happen only 2 times in a dozen years.  We said, "say hello to number 3."  Micah has gotten hold of the catheter and given it little tugs here and there. 
 
Last night, we noticed that the catheter was no longer draining into its outside diaper.  Instead, the inside diaper -- the one on his bandage! -- was very wet.  I called the urologist office and was told by the on call doctor to try to pull back on it that there is likely a clot at the bladder.  We're used to this method from the feeding tube.  I pulled back and got a nice mix of blood and urine, but didn't get much at all.  After waiting an hour, the tube still wasn't draining.  Then, I flushed the tube with sterile water... to no avail. 
 
A quick call to our on-call urologist and we were off to Scottish Rite to have them replace the catheter.  Bless our on-call doctor.  Really.  Pray for blessings on this man.  He called me at least 5 times between the time we went to Scottish and 10:15 this morning.  And, he voluntarily called the ER doctor to talk about Micah's surgery and what would be best to do for him.  He decided that the catheter didn't need to be replaced after all.  Instead, they just removed it.  That sentence doesn't really explain what happened.  They didn't remove it.  They pulled it, slowly, painfully from his newly operated on penis, where it was stitched into place.  Yup.  Found that out the hard way: Micah screamed bloody murder and they stopped, gave him codeine, and looked for the stitch.  Ta da!  There was no anesthesia to give; it had to come out painfully.  To our young ER doctor's credit, she was quick and as merciful as she could be. 
 
Micah seems to be doing just fine now and hasn't needed any extra pain killer since we came home at 2:40am. 
 
Happy Father's Day!

Here are a few more photos that we took today.  They are some of Micah's favorites things, the things we think are ridiculously adorable:
 
1) Micah loves books and has always been fascinated with the big shelves full of them.  Since the day we brought him home from the hospital, he has loved "his books."  When he refused eating in the the beginning, we could walk in front of the bookcases and show them off to Micah, distracting him into eating.  While that trick doesn't work anymore, he still loves The Books.
 
2) Micah gives kisses, which I may have mentioned.  These precious kisses usually cannot be solicited, but only given out as random gifts.  This, of course, makes them so special to Mommy and Daddy.  However, there is one friend who can have kisses non-stop.  That friend is Baby in the Mirror.  Baby in the Mirror gets non-stop sweet kisses, wet kisses, slobber kisses, even raspberry kisses.  Micah is a nut for Baby in the Mirror.  Frankly, we are too.

       

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Some_Favorites.zip (4465 KB)

We have a baby gate.  A lot of parents do.  Our baby gate is a leftover from an adorable terror known as Chelsea the Dog.  She was the cutest, sweetest, smartest, most stubborn cocker spaniel in history and we are glad to be rid of her.  So, we have this baby gate, the classic, standard baby gate. 
 
For the very first time, we pulled the baby gate out of its hiding place in the back of Micah's enormous closet and put it up in the bathroom doorway.  I suppose today is the first time I have cut Jared's hair when the baby was both awake and mobile.  Naturally, Micah would be curious about the stuff falling from Daddy's head and onto the floor.  So, cleverly, we shut him out of the bathroom with the gate.  I brought over some of Micah's favorite toys to entertain him so that he would be less likely to roam.  That was unnecessary.  Micah had no interest in traveling away from his daddy whom I was clearly torturing.  He clutched the gate, turning red with frustration and anger and disappointment.  This baby gate was clearly invented by the very Devil itself.  Micah resisted it immediately.  Before I had it locked in place he was on it and screaming.  Micah really doesn't get upset often, especially not the crying, throwing a fit kind.  But, he can get there quickly, as he proved today!  I cut Jared's hair in record speed (with only one slight gap in the back that Jared doesn't need to know about) and rescued the baby.  Yeah, right.  He didn't care for me.  And, I wasn't rescuing him.  Daddy was the one who needed to be rescued and Micah needed to do it! 
 
For the first time, possibly ever, Micah preferred me over Jared because of his post-op misery.  It was wonderful.  He cuddled more this week than he has since NICU.  And I truly loved every minute of it!  That's obviously over now.  It was a nice run.

   

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First_Baby_Gate.zip (2207 KB)

Poor Micah had his hypospadias repair surgery today (Stage 1 of 2).  We were scheduled for 8:35am and had to arrive two hours early for the 3-hour-long operation.  We arrived a little early, did a lot of paper work, and were ushered back to a spacious room to wait.  Really.  It was actually spacious, much more than you'd expect for a day surgery room.  After getting a thorough talk-through with our surgeon, the amazing Dr. E. Smith, Atlanta's best urologist (you don't have to take my word for it; it's true), Micah was taken into surgery about 20 minutes ahead of schedule.  The surgery took only 2.5 hours start to finish.  Mercifully, he came off of the ventilator like a champ and was breathing on his own before they even took him into recovery.  You can't imagine our relief!  And, the surgery was very successful.  Everything went as well as we wanted it to and Dr. Smith expects a perfect recovery, setting us up well for Stage 2 in December, at which time they'll rebuild the urethra.  Oh, yes, folks.  This is fun! 
 
Micah has a "cast-like" bandage keeping him clean and protected.  He also has a rockin' catheter in place, too, that has to stay put until Tuesday at his office check-up when the nurse will remove it. Until then, we'll be working on a double diaper system that catches pooies in one diaper and the catheter relieves into another one.
 
Micah is very grumpy and groggy and sore.  He keeps trying to crawl but won't put his knees down.  Instead, he is doing this whimpering waddle on his hands with his hiney sticking up in the air.  His hospital drugs are wearing off and he's got to survive on Tylenol with Codeine.  In case I haven't mentioned it before, Micah hates taking medicine -- so much so that he has taught himself to vomit to avoid the drugs.  Clever... maybe.  But, it means he isn't getting his full dose of pain reliever, too!  We'll work it out.  In the meantime, Micah is uncomfortable at least. 
 
The urologist, who is very experienced and would know about such things, says that Micah will be feeling much better in a couple of days.  I find it hard to believe, but I hope he's right.  Just like when you exercise, you feel worse on day 2, Micah's operated-on-area will be MORE swollen tomorrow.  Yippee!
 
I'm adding a photo of him, post-op, so that you can see that he is okay.  In this photo, he has on THREE diapers.  Poor buddy.  (Thanks for Mr. Cuddles, Kings!  Micah quickly snuggled right up to him, as you can see.)
 
Thank you all for you prayers during this surgery and while he is healing.
 
Heather

This morning in therapy, Micah couldn't keep his hands and therapy beads out of his mouth.  So, as I've been doing for days now, I reached in and swept my finger around.  And... YES!  A tiny tooth has just broken through his bottom gums.  It may be two teeth.  It's too soon to tell.  How cool is that?!  He's finally getting teeth!

Dr. Leonard was very impressed with Micah at his check-up today.  Micah is her smallest birth weight baby.  She's still so impressed with him that she makes sure that any of her passing colleagues know about him.  You see, it isn't just impressive that he's alive.  It's impressive that he is alive and healthy.  We're dealing with preemie issues like eating and basic physical therapy stuff.  But, on the whole, Micah is very healthy and getting healthier.  He's keeping up with babies his adjusted age very, very well.  He's amazing.  This week Micah and I will be taking a field trip to print a copy of Micah's newborn photo and 1 year photo for our pediatrician.  I don't know if she's seen a 396 gram baby before; and she really wants to see exactly how far Micah has come.
 
Micah got 12-month vaccines today, two of them.  And, he was very sad about that.  Nurse Brooke had to stab him two different times and I held his harms.  When it was over (quickly, good nurse) and Micah had his Garfield Band-aid in place, I scooped up that poor, sobbing boy.  He sat back and my arms and let me know just how grateful he was for those shots.  Then, still sobbing, he looked at Nurse Brooke and reached for her.  Turns out he wasn't grateful for the shots.  He was mad at me for holding him down for them.  But, I had something Brooke didn't have, Lovie.  Lovie is a tiny afghan and Micah love, love, loves it.  He crawls to it.  He spoons with it during naps and at night.  He goes nowhere without it happily.  And I had it.  So, he forgave me, though still hurt and crying.
 
For your benefit, I'm adding a newborn photo of Micah at 5 days old and a photo taken yesterday.  As of today, Micah weighs 15 pounds, 4 ounces and is 26 3/4 inches long.  He gained nearly 14.5 pounds and 16 3/4 inches in only a year. 

   

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12-Month_Check-up.zip (2003 KB)

Today is Micah's first birthday.  Let's just take that in for a moment!  W-O-W!
 
We've recently relocated to a new apartment (yes, again), and I think everything is finally unpacked.  We literally packed and unpacked non-stop for a week and a half, stopping to eat and feed the baby.  Our new apartment is great!  It's a little smaller, but the space is better, especially the living room.  Micah has a lot of room to play, which is good since he has a lot of new toys and books from his birthday!
 
Today, as planned, we went back to Northside Hospital and visited our doctor to show off our super baby!  He's pictured holding Micah and grinning, something he did throughout our visit.  We also saw our old PT and several of Micah's nurses and RT's.  It was wonderful.  They were all very impressed at how well this sick, 25-week baby looked now.  Thank you again for all of you who prayed and who continue to pray for our miracle baby.
 
It's been awhile since I posted one, so here is the photo of Micah with my watch.  It is the same watch that I photographed him with on Day 5. 
 
This year has been sad, surprising, frightening, joyous, and miraculous.  Micah really is doing well.  He still isn't a big fan of eating, but one day he'll be a teenager and I won't be able to keep enough food in the house!  We saw GI today for a last minute appointment.  Before we go to Marcus Institute for their feeding program (an all-day, comprehensive therapy regimen at the facility), we need to rule out any medical reasons for Micah not eating.  So, while Micah is in for his hypospadius repair next Wednesday, Dr. Lewis will scope Micah's esophagus and stomach to make sure they look normal.  He's anticipating a completely normal result and believes, as the rest of us do, that Micah's dislike of food is a common preemie issue, not a medical one.  Still, with all of that, our GI specialist -- who would know -- says that Micah is doing better than a 25-week baby should be doing, especially for one as sick as Micah was. 
 
And, he's right.  Micah is keeping up developmentally with babies his corrected age, which is less than 8 months.  This past week (when we didn't have internet access at home yet) Micah took off... literally!  Micah now crawls wherever he wants to go.  If there is something interesting (read "off limits") then Micah will take is little body right to it.  It's amazing.  Our goal was for him to crawl by his birthday and HE DID IT!!  It's not exactly smooth, yet, though.  Jared describes it as a baby sea turtle move.  Truly, he looks exactly like a baby sea turtle moving one limb at a time in staccato fashion until reaching his objective.  It's adorable.  Last night right before bed we were playing in the floor with Micah and he crawled to his toy bin, grabbed the top of it, and stood up.  Just like that.  My mom was here over the weekend for Micah's birthday and let Micah pick out his own toys from the bin.  I'm sure I can thank her for Micah needing his particular toy so badly that he just went for it like that.  Tonight, when playing with Jared, Micah was crawling all over him and several times planted his feet on the ground and stood up, hands free, without Jared supporting him at all.  We've asked him to please slow down and told him that he doesn't have to catch up and grow up all at once. 
 
It's fascinating and wonderful to watch Micah change and grow and develop.  But, we are very aware of the special sadness of losing Micah's "baby-ness," which is really happening quicker than we thought it would.
 
Let me not forget what may be one of the greatest things Micah has ever done:
He said, "mama."  Yes, he did!  He doesn't have a clue that it's me, but he's beginning to mimic since those tubes are helping him hear.  He doesn't make any hard consonant sounds like "ga," "da," or "ba."  He's a preemie and a preemie who didn't get to hear much for a few months there, so we know he'll be speech delayed, which is much more manageable than being eating-resistant.  This week, Micah has been babbling noisily and even mimicking "mama." 
 
I told you it's been an amazing week!
 
 

         

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Year_One.zip (4792 KB)

We're moving to a new apartment (saving us a lot of money over the next year), which is very stressful to coordinate with a little baby around.  We still haven't lowered Micah's mattress from its newborn position of being as high up as possible.  We were really hoping he would wait until the move, which is now only a week away, so that we wouldn't have to essentially take apart and rebuild the crib twice. 
 
The last post told you about physical therapy (PT) and how quickly Micah learns.  While he isn't crawling yet, he's really thinking about it.  He can however pull up, usually on parents, and he can get from any position into a sitting position.  Our fear is that he'll connect those two things, going from floor, to sitting, to pulling up. 
 
It has happened.  While juggling Micah on the changing table, we watched him flip, flop, spin, sit, grab, pull, and stand!  Ta da!  I tried to capture it on our little digital camera, but the battery died!  Ugh!  One day we'll be able to get a real digital video camera instead of using our still digital camera whose battery just doesn't last as long as we wanted it to today. 
 
These photos are Micah after his nap today.  I went in and gave him his appetite stimulant while he was sleeping.  When I came back in from putting the syringe in the sink, Micah was proudly sitting up.  The other photo is Micah having is first sip of RC Cola (on sale at Kroger for $.99/ 2 liter).  Thanks, Heidi, for encouraging us to let Micah drink from our cups!  Anything to get him eating, I guess!
 
Heather

   

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Micah_is_learning_quickly.zip (2108 KB)

A lot has gone on in the past couple of weeks:
 
I had my very first Mother's Day and it was just as special as I wanted it to be!  Jared and Micah took me to lunch, where Micah had to be held and refused his own lunch.  He didn't get the memo that what I wanted for my Mother's Day gift was for him to EAT!  Then we went to an arts festival in Duluth and heard a great a capella young men's group singing. 
 
Micah has had several important appointments lately.  Last Friday Micah passed his hearing test at the ENT.  He passed the hearing test in the hospital, but then failed the others because of fluid on his ears.  After having tubes put in his ears in February, this was the first time that the fluid was gone and we could have the test done.  I was surprised how well he did!  Micah could hear all of the tones, even the softest ones.  We met with the endocrinologist for the first time in several months and all of Micah's hormone levels are normal and functioning at their appropriate levels on their own.  He's still taking synthroid for hypothyroidism through June, then we'll likely take him off of it completely.
 
We started speech therapy because of Micah's poor eating.  We're learning some techniques to help him eat, but he's still not doing a stellar job of it.  And, we've added an appetite stimulant, which does help a lot of the time.  Micah's diapers don't fit as snug as they used to, so I'm hoping he's gaining the weight he needs to.  We'll be heading to the dietician again next week to see how he's doing.  One of the "tricks" we're trying is distracting Micah with TV while he eats, which I wholly disapprove of, but will try anything to get him to eat.  I've used a Baby Einstein that Amy Beane gave me.  It's the Mozart version and Micah yells at the TV for nearly the whole movie!  It's hilarious!!  He's not angry or sad.  He's just expressing his opinion, which I can't yet tell if it's positive or negative.  But, I know it's LOUD!  I tried another one "Wordsworth," which actually uses language and Micah laughs at the puppets in that one and doesn't yell at it at all. 
 
At physical therapy Micah is showing a great deal of improvement!  This week we worked on crawling and sitting and the transitions between the two, along with the usual neck exercises.  Micah is very interested in crawling and I think he knows how to do it.  He's just working on the fine mechanics.  Our goal is for him to crawl by his birthday.  He's only got a couple of weeks before the deadline now!
 
On a note that isn't directly about Micah (I know, can you believe it?), we're moving to a new apartment next weekend.  I dread moving with the baby, but it's a great apartment complex, nearly identical to the one we're in now, except for the slight difference of $$.  We'll be saving $2000 for the year by moving, which is great since I'm not working like we originally planned. 
 
I'm adding a few pictures, too.  My first Mother's Day and Micah's first trip to the pool, which was way too cold, but we got the photo!  Then, we went straight back home.  If the weather will ever stay warm we can really try out the great new pool float we got for Micah.

     

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A_lot_to_report.zip (3303 KB)