How tiny breaths teach us big things

Six months, 13 weeks, or 11 weeks?

Well, Mr. Struthers, otherwise known as S-man (heroic connotation not lost) is SIX MONTHS OLD!!!  That is, from his actual birthdate.  But you may have heard the term “adjusted age” in referring to a preemie, which is simply their age from due date.  Struthers’ adjusted age is 13 weeks today, and we’ve had him home with us and actually felt like parents for 11 weeks today (meaning he came home from the hospital 2 weeks after his due date).   These numbers are at the forefront of my mind, as we’ve had FOUR physician appointments in the last 2 days, and they utilize all three “Ages” in making decisions regarding Struthers’ care.

Medical updates with the least severe issues first:

  • Preemies are prone to vision issues, and our little guy has two strikes against him from his -9.75, one-eyed mom.  So he’s been seeing an ophthalmologist since he was about 3 weeks old, and this first non-NICU appointment has produced quite a bit of anticipation bordering anxiety.  Eli noticed Struthers’ inability to focus on or make eye contact with objects close (within 15″ or so), but we know he has an incredible distance vision, tracking, following and responding to anything further away from his face.  Daddy was right–Struthers is currently a +1.5, but that is fairly common at this age, and will change as he gets older.  Optometry lesson:  positive and negative powers have to do with the length of your eye.  Extreme negatives (like mine) have elongated eyes, making retinal detachments or tears more likely.  Positives have shorter eyes–to be expected in babies.  Long story short, the ophthalmologist expects this to neutralize as Struthers grows.  We will see him again in a YEAR unless we notice anything else, watching for alignment issues (he will come by that honestly).
  • The swallow study and Upper GI study showed that Struthers does indeed have a significant amount of reflux.  And it’s no wonder–he has a hiatal hernia that prevents the sphincter from fully closing, allowing food to come back up.  Quite frankly, it was a relief to know that we weren’t just crazy or that we’d have to be patient and let him outgrow this.  He won’t outgrow this, and in fact, it will only become a bigger problem as he gets bigger and older.  More about what that means in a minute.  The study also showed that while he’s not aspirating when he takes in food, he probably does ‘micro-aspirate’ when he refluxes the food back up.  This simply means that small amounts of milk/food get into his lungs, which explains the next point:
  • We were discharged from the NICU on 1/32 of a liter of oxygen.  This is a very small amount, and we were all in hopes that we would be able to quickly wean him off this “tiny puff”.  But in the past few weeks, it has become more and more apparent that not only was that 1/32 not sufficient, but nor was 1/16 or 1/8.  So we are now on 1/4 Liter, and we still have some significant desaturations through the night.  We are hoping to get on top of his chronic lung disease with steroids, inhalers and nebulizer treatments.  Hopefully these things and trying to eliminate/minimize reflux aspiration will get us back on track and allow his lungs to heal.  So please pray for this little cold he has to STAY A HEAD COLD, as miserable as it is.  It could be extremely dangerous if it goes to his chest, so we are being as aggressive possible in treating it.
  • So how do we know about the night desaturations?  Yes, we’re back on the oximeter and heart rate monitor at home.  The sleep study mentioned in the last update post was not all that great.  I knew that from being there when it was done, but I didn’t know exactly how bad it was until I saw the full report.  In the 35 minutes they weaned him DOWN to 1/16, Struthers had 20 apnea episodes!  So the test that was supposed to be done OFF oxygen, with it only added in when he needed it, could not even be done fully.  ROOM AIR CHALLENGE FAIL!  This brought up so many emotions that I’ve struggled with since leaving the NICU.  We were certainly ready to have our little man home after 105 days, and he certainly seemed to grow and thrive in the home environment, but there were some underlying issues (namely BREATHING) that I’m not sure we were fully equipped to deal with.  We were sent home with no monitors, which I was told every NICU mom has anxiety over.  Fair enough.  And the room air challenge our first NICU had taught was a benchmark for going home wasn’t done in the facility we discharged from.  When I asked about it, we were told “Well he’s going home on oxygen.  If he could pass a room air challenge, then we wouldn’t be sending him on oxygen.”  OK, I guess that made sense.  But I should have just listened to my mommy-gut, because the guilt associated with realizing your baby’s not breathing when he’s sleeping for FIVE WEEKS at home is not worth it.  Lesson learned–Mama Bear awakened. And even a sleeping mama bear will take being awakened by the monitor alarms in the middle of the night anytime over not knowing.
  • Hernia repair–Well, we saw a surgeon this week that agreed it would probably need repair.  But the supposedly ‘simple fix’ will not be so simple, and I’m still  digesting (no pun intended) the fact that she wants to place a G-tube for feeding and venting that would be in place for 6-9 months.  WHAT?!?  Still working through that one, but it seems like that might be the direction we’re headed.  It will be much easier and less impactful to do it when he’s this young than after he would be learning to eat solids.
  • The surgeon also sent us to a GI specialist, who is doing a workup for allergies which could be aggravating things.  The upside to this is that if digestive issues are able to be controlled, they MIGHT consider doing the hernia surgery WITHOUT the G-tube.  So we will try a few different plans of attack, each for about two weeks exclusively (elementary science flashback: independent variables), and then make a decision about whether the surgery will include feeding tube placement or not.
  • OK, so this isn’t medically severe, but it’s something I’m probably having the hardest time dealing with:  It “hurts” my child to be held.  :(.  This realization is fairly recent, and I found out from another preemie mom and the Occupational Therapist that this is a fairly common preemie problem.  I thought he just didn’t like to to be cuddled…but it’s more and more apparent that he is happiest flat on his back without being touched, except he does like to hold your hand and fingers.  So I finally said something out loud…”Oh, sure, hon.  Think about it…when he was supposed to swimming in amniotic fluid, he was being handled.  All the while his body was trying to grow that thicker skin, but that energy was needed for more critical development.  Neurologically he’s still recovering from that, and he will.  There are lots of other ways to show him love and affection, and clearly he likes being near people and interacting verbally.”  Sigh.  OK, still counting our blessings, but at least I’m not crazy.  So our evening snuggles involve my laying flat next to him on his playmat, looking straight up at his dangling toys or a book (arm’s length away), or sometimes just listening to music.  And we’re both pretty happy like that.
  • In all of this, I have to say his physicians and care team are AMAZING!!!  I LOVE his therapist, pulmonologist, surgeon, GI specialist, ophthalmologist and pediatrician! They are all so responsive, working him into busy schedules at the last minute and calling at any hour, sometimes just to check on him.  And we never wait in waiting rooms==they always shuttle us away to the back, even if they don’t have an exam room, they just get us out of the waiting area.  So blessed…

OK, so if you’re recovering from all that news, here’s the fun stuff that keeps us going:

  • I’ve mentioned it before, but it’s becoming more and more profound…Struthers LOVES music!  It’s crazy to think he has musical tastes already, but he certainly does.   Instrumental hymns and piano music top the list for him.  Thank goodness for Pandora–Heavenly Lullabies is the BEST station!  There’s this one song by Piano Guys that’s a duet with a cello–he goes nuts kicking his legs, sometimes singing, but also somehow simultaneously settling down.
  • He also likes anything with a rhythm or pattern–Dr. Seuss, nursery rhymes, children’s songs, “Gramma Shell’s Struthers song” and especially Brown Bear, Brown Bear…he seems to be able to “Center himself” well with any of those, and anything else “disorganizes” him, according to his therapist.
  • He has daily CONVERSATIONS with his Daddy.  It’s hilarious to watch–he thinks he’s talking in full out sentences to him and it makes my heart leap!
  • He doesn’t like to be wet…at all.  Diaper wet or bathtub wet.  Also possibly a neurological touch thing?  But we will see how he likes the pool in a few weeks!
  • After about a week of trying for it, he managed to get his thumb/fist into his mouth.  Now that’s his self-soothing of choice and he fairly efficiently ‘finds’ it every time now.
  • Struthers has been sleeping through the night for about 5 weeks (BABY WISE!!!), except for being sick this week and needing the nebulizer at night.  He is such a happy little critter in the mornings when he gets up!  He seems to find comfort in routine and pattern, and that’s worked well for us.
  • We have been teaching him sign language since his first week home, and he’s definitely picked it up, doing a lot of it on his own.  He will tell us when he’s hungry (“Eat” or “Milk”) or tired (“Sleep”), and I have a feeling this little skill set may save us a few temper tantrums later.  Not that we’ll be immune, I’m sure, because he does have one quick temper if he doesn’t get something right the first time!
  • 11 pounds, 4 ounces!!!  He’s in the 5th percentile for his adjusted age (13 weeks), and not on the chart yet for his actual age (6 months), but everyone is so pleased with his continued weight gain, and they expect him to meet the bottom of his actual age growth curve by about a year.  WAHOO!!!

Thank you for the continued prayers! We are so very grateful and can feel the love from so many corners of the country!  Thanks for running this marathon with us!

Doting and Pouting Blue Fox

1 Comment

  1. Cami Bremer

    Comments imported from CaringBridge (2 comments):

    Cami & Eli, You’ve been in my prayers…but after reading this, they will be more urgent! Can’t begin to imagine what you’re going through with your precious boy! And thank you for taking the time to post these updates for all…much
    easier to know what specifically to pray for. Praying for strength, healing and rest for all!
    —Heather George, May 18, 2015

    Bless your hearts, all three of them. You parents are doing an amazing job, learning so much, inspiring the rest of us with your patience. Yes, prayers will continue. We love you all and thank you for sharing your journey
    with its ups and downs.
    —Catherine Rice, May 15, 2015

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