High-Fives for All

Obviously, yesterday was laundry day.  This should explain the robot t-shirt/ froggy pants/ orange argyle socks combo.  But what is infinitely cooler than Miles' last resort ensemble is the fact that this kid gives high-fives.  Jesse is the high-five dojo in the household, and Miles is his little grasshopper.  And I thought I was the only teacher under the roof. 

Maybe by Miles' first birthday Jesse will have taught him how to do the Super Bowl Shuffle.  Don't think that he won't try.  Don't doubt that my eyes will be heavily rolling, though I will be beaming on the inside.  Daddy 'n' Baby bonding is so special.  I am honored that they let me tag along during their dude time.  

Speaking of football- I am sitting here watching all of that glorious snow in Pittsburgh, and I am green with envy.  I seriously doubt that I'll ever get a snow day as a teacher.  And tomorrow would be a perfect snow day.  Wait, now that I think about is, any day would be a perfect snow day.  It would take much white stuff to shut down our town- maybe a 1/4" and some dark clouds.

  

What ten months looks like

Right after Christmas, we took a quick day trip to Va Beach.  Jesse needed to run an errand near the ocean front.  The weather was too nice to pass up, and beach time in the winter is my favorite time.  Quite.  Intimate.  Brisk.  We had a lovely time soaking up the winter solstice.  Though shy of ten months in these pictures, Miles is that and two days.  Lovebug is growing by leaps and bounds, and he's gnawing on my forearm as I type.  

Breaking down. Building up.

Yesterday, after we got home from the hospital, I should have been relieved and thankful.  Instead of positive feelings, a darkness washed over my heart.  I couldn't hold on to the happiness of the moment.  Fear.  Depression.  And more fear.  That's what was calling the shots in my exhausted brain.  

Fear- I remembered that there was another medical issue that we'd need to deal with once the pneumonia got in check.  Looks like Miles has some late appearing Epstein pearls on the roof of his mouth.  Very late arriving.  They should have been here 9 months ago and gone 8 months ago.  If they are normal Epstein pearls, then no medical treatment will be needed.  But since these spots do not correlate to traditional medical time lines, I am freaking out a bit.  Does Miles have oral cysts that will need surgery?  I don't know.  His pediatrician wants to wait.  I want her to check with a pediatric orthodontist.  She agreed to my request today and will follow up with a colleague.  She's a great doctor who is willing to help Miles with anything. 

Depression: I am still sorting out the emotional trauma of Miles' heart surgery.  Will I ever come to terms with that fear?  Anger at myself for not having resolved my guilt over Miles having Down Syndrome.  Disappointment in myself because I am not more optimistic.  Very ironic, I know.  Depressed that I am depressed.  Ugh! 

Back to the fear: Are we going to live from one medical emergency to the next?  What good news will I ever get to share about Miles' health?  What does the future hold for my family?  Will I be strong enough to support Miles and Jesse?

A classic Anna tailspin.  When something scary happens, like Miles' hospitalization, I bottle everything up until the end.  I pretend to be stronger than I really am.  Coping strategy, for sure, but I need to devise a healthier method.  Especially since we are starting down a long road of many ups and downs.  I need to remember that being courageous does not mean acting courageous.

I started reading my first parent account DS book today.  I have been hesitant to read most personal stories because I don't want to compare our situation to theirs.  I started shortly after Miles' diagnosis, and I wasn't ready.  However, after coming to terms with my feelings from yesterday and realizing I have a whole host of other issues to sort out, I decided to see how someone else did it.  I am reading Life as We Know It by Michael Berube.  A friend lent me her copy months ago.  Today, by page 70, I understand why she wanted me to read this book.  When I am done, I will post my thoughts.      

On a positive note: Miles' follow-up appointment went well.  He is to continue the antibiotics for 6 more days.  His energy and spirit has returned full force.  In spite of my struggles, I know a miracle when I see one- and I just kissed one good night.

We are home.

Miles chowed down on 5 ounces of formula this morning, thus making hospital bail.  Jesse and I are sitting on our sofa now, dazed from the last 72 hours.  I can't believe how quickly Miles went feeling fine to being utterly wiped out.  From having cold symptoms Saturday morning to being diagnosed with pneumonia and dehydration on Sunday night has left our heads spinning.  In the back of my mind, I am scared that this will be the trend for colds- that upper respiratory infections will quickly lead to bigger troubles.  Miles has already been vaccinated for some types of pneumonia, but I've got to remember that he will never be fully protected.  As much as I secretly want it, I know making Miles a "bubble boy" will only lead to more problems.  I've never been a germaphobe- though never say never.  Knee-jerking must be a typical parental reaction to scares like this... or at least I hope this reaction is normal.  Obligatory silver lining- I've become a ninja at rectal temperature taking and nasal aspirating.  Not to saying that I enjoy either of these tasks because I really don't!  

Little man has transitioned home well.  He's napping, so why am I awake and typing?  Lemme run and catch some Zzzzz's.   

Update on the update

It's almost 10 pm; little man Miles is asleep, though not in his own bed.  If he continues at his current rate of recovery, we will surely be home tomorrow.  The evening had its ups and downs, but mostly ups.  On the huge plus side, he has been taken off IV fluids again.  Downside, he's off because no other vein could be found.  I am wishing on every star in our cloudy and cold sky that Miles will start drinking more.  I was able to get two ounces of a Pedialite 'n' pear juice cocktail in him earlier.  And moments before passing out, he slurped two ounces of his yummy soy formula.  I doubt that this is enough liquids to count as healthy, but at least he is headed in the right direction.  More in the morning. 

Update

Miles was admitted into the hospital yesterday.  His lack of wet diapers and low blood sugar nudged us in that direction.  His pneumonia is responding well to the antibiotics.  However, Miles still will not drink on his own.  He was taken off the IV late this morning, but since he won't drink independently, the IV was started again.  We are spending another night in the hospital- just to be on the safe side.  And besides, if we had to come back, there would be no vein for them to stick.  Yesterday, only one could be found for the IV- that's it!  Miles' arms and legs are so chunky; all you can find is more chunk under the chunk.  Now that he is in pretty good spirits- still flirting up a storm.  He's been fairly happy, except when his temperature is being checked.  Can you blame him?  Wish us luck!

Down for the Count- the crud has morphed

Around eleven last night we learned that Miles' cold has turned into pneumonia.  Our trip to urgent care did little to alleviate his discomfort, and nothing seemed to quell his fever.  I watch that thermometer jump from 99.6 to 101.3 to 102.7 to 103.4- and that's where we decided to go to the hospital.  The on-call nurses and doctor told us that we didn't need to go, but the fact the Miles was refusing fluids and not cooling down.  And once we got to the hospital I felt they were probably right.  In triage, Miles' temp had dropped down to 101.6, and he oxygen level was at 100%.  Everybody kept asking if it was croup, as if this could be the only explanation for his fussiness.  (And pneumonia was quickly ruled out on Friday.)  Miles was hilarious in the ER.  He was tracking people who passed by our room, but the curtain kept blocking his view.  So he would crane his entire body to get a better view.  Much funnier to witness because his timing was right on.  Luckily, we packed a few toys.  And played, in between nose swabs, medications, and x-rays, right up to midnight.  I am very thankful that we did go to the ER because who knows if the pediatrician would have caught the pneumonia during the office visit today, especially without an x-ray.  Kudos to Jesse for insisting we go instead of waiting things out.  Miles is still hot today.  The last reading I got was around 101, but the thermometer died on the job.  I know Miles was glad to have his buns freed for a bit.  The mucus is heavier than ever, but he was able to drink 3 ounces of Pedialite!  A huge accomplishment because he wasn't taking more than an ounce or so at each feeding, and he has totally refused solid foods.  But best of all- I changed a wet diaper around 9 am.  He hadn't been wet since 6 pm yesterday- very scary.  The ER doc told us to come back in the morning if he didn't have 2 wet diapers by then, but his regular doc said to wait until 2 pm and come into her office for a check-up.  We have decided to wait to see his doctor because she knows him best, though the ER doc from last night was awesome.  She was observant, thorough, listened well, and was fast!  Two thumbs up from two very tired parents.  Miles is starting to wake up from his am nap- more details later.   

the creepin' crud

Miles has his first ever cold, and it's a whopper.  Around 3 last night, we were awoken by a piercing scream.  Miles never does this; he might fuss a bit- but he's easily coaxed back to sleep.  However, he hollered until close to 6 am.  He was running a low grade fever, but I just chalked it up to him being to warm in his jammies and blanket.  Everything seemed fine later this morning.  He ate well, took a good morning nap, and was in a decent mood.  The proverbial poopy diaper hit the fan around 10:30.  The same crying from last night started up.  His fever had also gone up to 101.6 degrees.  Our on-call pediatrician sent us to the nearest urgent care to tie Miles over until Monday.  Apparently our regular doctor does have Saturday morning hours, and I heard two people too many that we should have called earlier.  Um, hello- he was feeling fine earlier.  Comments like that are very unhelpful, especially when you are stressed out over a sick child.  Anyways- the trip to the urgent care went pretty well, except that they really don't know anything about infants.  Like how to properly take temperature, weight, etc.  We were asked for ball park figures on both.  The doc, though friendly, took the anti-biotic cop-out route.  When in doubt, call in the anti-biotic.  A philosophy of which I am not a fan.  Anyways, what he really needed was a decongestant.  I asked the urgent care doc to contact the on-call pediatrician and run her plan by him.  I am soooooooo glad I asked her to do that because the other doc changed the prescription.  He said hold off on the anti-biotic and try a decongestant first.  

The remainder of the day has been pretty tough.  The fever is slowly dropping, but the stuffiness is picking up.  It's nearing ten thirty, and he's getting restless again.  I think Miles was only asleep for 30 minutes, tops.  Jesse is up there now- relieving me from my sick duty.  It's actually tough to detach myself when Miles is feeling bad- like I have kicked into Mama Bear mode, and I am out to protect my cub and maul anyone who stands in the way.  Oh, an angry squeal on the monitor- let me run.  A mama bear's work is never done!

Reality Check

I think I had a mid-mid life crisis last night- might still be having it.  Nothing too serious; there's no sports car parked out front, no hair plugs implanted, or any other traditional sign of anti-aging.  But aging does factor in.  Since the birth of my son, I am feeling much, much, much older.  My eyes are a bit baggier, my boobs are a bit saggier, my hairs a bit frazzlier- that's not even a word, but it describes its current state.  I've always been a pretty low maintenance lady- opting for flip-flops, a pony tail and a pair of dark shades to look cool.  However, the prospect of make-up seems necessary.  As for the mid-mid life meltdown, I decided that Jesse and I should get tattoos for our upcoming 4th wedding anniversary.  If you know me, you know I hate three things on this planet: (1) snakes, (2) needles/ shots, and (3) snakes carrying needles and administering shots.  What would be more ironic is if I wanted to get a tattoo of a snake- but since this is only a crisis, none of the inking will ever happen.  

Part two of the mid-mid-meltdown, I made Jesse promise to go to a Metallica concert with me.  Prior to the procreation, I was a major concert junkie.  Nothing beats the excitement of a live show.  My best friend and I even travelled across country to see Widespread Panic at the Greek Theater for three nights in Berkeley to celebrate our college graduation.  I don't know what was more rock n' roll, the band's amazing performance or the super sketchy Green Tortoise Hostel we stayed in.  You needed a tetanus shot just to open your room door.  Ahhh, the good old days.  It just dawned on me that what might be the catalyst is my 29th birthday, still safely on the horizon, but the date is hurtling at me like a piece of blazing hot Space Lab shrapnel.  Frankly, I'm shocked that I even care.  Numbers like 29 or 30 shouldn't make a difference, but "should" is an utterly fruitless and annoying word. 

Luckily, Miles is shaping up to be a very hip kid.  Music seems like something he readily connects to.  Currently, we are playing "BA/BY- Lullaby interpretations of AC/DC."  It might be the most soothing album ever; I keep repeating track 5- "Back in Black."  It not only reminds me of the rockin' original version, but the song is so beautiful.  Miles also has what we call "The Wild Hair."  My parents will know exactly what I mean.  He's got a feisty and adventurous spirit that I cannot wait to see blossom.  I remember reading that children with Down Syndrome are typically low key and mellow- think it was from that parent handbook.  This was shortly after we got the diagnosis.  I was left with the false and sad impression that my son would be unresponsive and placid.  

Praise God- the kid is a spitfire.  I have had people, with the best intentions, tell me that "at least Miles will always be happy."  Ummm... that's not even true now.  What an awkward stereotype, and it certainly should not be bandied about as some sort of consolation prize for parents.  Regardless, Miles is a wonderfully wild child.  See for yourself!  (Hair styling courtesy of Daddy; tangle removal courtesy of Mama.)  He's also got a good dose or rebellion in those genes... 

             

More Christmas pictures to share

My favorite gift of all... Miles.
Miles and his cousin Windsor sharing a book and some snuggle time.
Cousin Kelsey was our official babysitter; I'm putting her on speed dial! Our professional package opener; he must take after me.
Santa Baby- too cute!  What you don't see if the chip clip gather all the extra fur; it was to only way we could see his face.