Wednesday, May 9, 2012

"Hey two month well check-up, thanks for the Down Syndrome reminder..."

Have you ever had an “oh yeah, thanks for the reminder…” moment?  I mean when you’re plugging along in life, and then… OH YEAH, I kinda forgot about that... Thanks for the reminder.  Well, yesterday was one of those.

“Yesterday” just happened to be Leo’s two month well check-up.  Once again, I had begun journaling Leo’s first big post in my head before we even left the house for the doctor’s office.  It would be all about Leo’s two month check-up. All about how well he's doing. How incredibly lucky we are that we have so little to deal with medically.  How he is already baffling his doctor despite the odds of complications associated with DS.  Now don’t get me wrong, those dreams weren't entirely unreasonable... but the reality is, we entered the door for a “well” check and exited the door with a wedge for sleeping, two new medications, a cardiac apnea monitor, and immunizations that were postponed.  Now that was not the update I had begun blogging…

Before I go any further, let me take a few steps back to the beginning.  Leo’s first week of life, to be exact.  (I have to save Leo’s birth story for later, just to avoid making this post about 10 miles long!) March 5, 2012, at 5:27, our wee bundle arrived at exactly 37 weeks gestation, weighing in at a whopping 8.0 lbs.  That's actually pretty typical for my babies, considering Meris weighed 7.0 lbs at 36 wks along and Seth weighed 8lb 12 oz at 37wks 3days!  Leo was healthy and perfect. He surprised me with a good latch and great feeding skills for a baby with DS, but he was just sooooooo very sleepy when it came to breastfeeding. He had no endurance and spent only a few minutes at a time feeding. So the lactation nurse and I devised a plan by which I began pumping the very first day of his life. Long story short, it became feed and pump then feed again. We were off to a fabulous start and everything seemed so typically normal in newbornland. Except for Leo's sleepiness!

On our fifth day of newborn craziness, we were preparing for our big day to go home from the hospital... or so we thought. That's when things became iffy because Leo's bilirubin level had continued to climb.  He wasn't eating enough to bring his level down. Things turned a little further south when we found out his weight on Day 5 had also dropped more than it should, down to a tiny 6lb 12oz (more than 16% of his body weight lost, compared to the normal newborn loss of 5-10%). To top things off, the pediatrician ordered labwork which revealed our little guy had a critical sodium level and electrolytes that were completely abnormal, basically he was dehydrated. On day 5, I was discharged and Leo was moved to the Special Care Unit.  Luckily, I was allowed to stay with him in what was a 24-hr continuously monitored type set-up.  He was placed on an IV, heart and breathing monitors, placed under bililights, and strictly fed (including formula supplementation) every 3 hours. It was a grueling 24 hours, let me tell you!  But our little guy bounced back so quickly that he only had to spend one night under special care before being discharged to go home. 

At home, we continued the "every 3 hour" feedings and supplemented with formula. With the help of Leo's amazing dad Chris, I was able to pump every 3 hours while he fed Leo at the same time.  Around. The. Clock. Nonstop.  Leo went to the pediatrician's office for a weight check after arriving home, then again at two weeks and one month.  By one month, he weighed in at a hefty 9lb 11oz!  He was doing so great, I almost forgot he has Down Syndrome.

Also at one month, based on his having reflux and low muscle tone, our pediatrician ordered a barium swallow study.  This was no big deal to me, as Seth also had reflux and went through a swallow study as a newborn.  I totally knew what to expect.  On April 5, we headed over to Medical City for yet another little routine thing.  For the study, there are breastmilk and formula consistency types of barium which were fed to him while an xray views the liquid traveling through his esophagus. Leo's swallowing showed traces of liquid leaking into his nasal passages. Not only that, the liquid would wash against the opening to his airway and linger... revealing his muscles for swallowing were weak.  This is a side effect of hypotonia, low muscle tone, common in Down Syndrome. So what did all that mean?  It showed he's at high risk of aspirating (liquid going into his lungs), at high risk of infection due to bacteria from the liquid going into his nasal cavity, as well as at risk for pneumonia. Wow, that was a lot more than I had expected. 

This required us to begin thickening his milk or formula to make it a heavier consistency that would travel more quickly. The therapist came up with a recipe that looked perfect on xray, and I was in charge of making it work at home. Well Ha, Ha, Ha, is all I have to say about that!! Seriously, we thickened with "simply thick" as instructed and our little guy couldn't get it out of the bottle.  We switched to rice cereal for thickening and that wouldn't work. Without spending too much time on what the problems were, I will say he spent an hour at a time to get less than one ounce when he should have been eating 3 ounces in 20 minutes!  There were conversations with the pediatrician, the nurse, the specialist who performed the swallow study... there were attempts with four different rice cereal brands... and FINALLY, three weeks after his swallow study, we found the key.  And if you ever know anyone who needs to know how to thicken formula successfully... here's our Secret Formula! 
  • Mix formula with HOT water
  • Add Beech Nut rice cereal (use amount directed by your therapist)
  • Blend well, in a blender, then refrigerate.

Geez, that was grueling!  After which, we quickly settled into our new routine (with one slight bump consisting of a sinus infection + ear infection + oral thrush), but otherwise it was a routine.  And once again, I kinda forgot about my baby having DS. 

Which brings me to the "Two Month Well Check-Up".  Leo grew two whole inches, which took him from the 25% to the 50%!  He weighed 10lb 13oz, keeping him at the 25% which is great because that was a steady gain.  His little head measured large enough to take him from the 10% to 25% also!  All in all, great.  Then after all that good news, I sorta casually mention how the week before Leo had spit up and couldn't clear the liquid on his own... causing him to stop breathing until I could rip him from the bouncy chair, rush him to the bedroom, grab the suction and remove it. (With the fear that I had injured a tonsil in the process, I might add, because I did it so frantically!)  Ummm, what was that?  The baby was choking?  So if mom had not been there to suction the junk from his throat, there would have been serious consequences?  Why yes, that is correct Dr. London. So there you have the story behind Leo being awarded the brand new, flashy Cardiac Apnea Monitor which he shall be adorning 24-7 for no less than the next two months. Which, by the way, has already had it's first alarm tonight (for apnea, as he was sleeping... which meant he paused his breathing more than 15 seconds... isn't that exciting?) and is the reason I am wide awake writing this post.  Yay me!

As for the other awards, I won't bore you with the details of Leo being switched from zantac to prevacid.  Now the fact that we have to start using special ear drops on a weekly basis to dissolve ear wax is pretty interesting to me!  I had no idea such a thing existed.  But wee Leo's ear canals are teensy tiny, even in newborn measurements of teensy, due to (I know you can guess it...) DS.  Apparently one teensy bit of wax will block the pediatrician's view of his entire eardrum. No lie! Last but not least, he's been awarded a big 'ole sleeping wedge.  It looks pretty fun to me, like he'll be sleeping hanging from a bungy! I'll seriously have to post pics of it once he's sleeping on it. These were all some fun, and not so fun, reminders of DS.  I know, I know... they could be the story about any typical newborn on the block... but for our baby, they are all small side effects of the way he was born.  With Down Syndrome.  They are reminders that I can't take anything too lightly. That just when I settle in to feeling safe and secure, the smallest thing could become bigger very quickly.  But that's okay, he's worth every fine detail.  And we're learning to roll with it....

love, Joyce


  1. I didn't know he has down syndrome. You words show me what a strong person and amazing mother you are. He is a blessed baby boy :)

    1. Sorry Anne, this post you made went to "spam" and I just saw it tonight! Yes, our little one was born with a little extra specialness! We sure do love every bit of him. It's bound to be an exciting journey!

  2. You guys are doing such an amazing job taking care of everything he needs. I know thst it's hard to see him going through all these things but thank goodness we live in a time that monitors and medications are available to help. I'm glad his growth is going so well and he's so gorgeous. Just know i'm thinking of you all the time.

    1. Thank you so much, my dear friend! We are definitely not lacking excitement it seems :)