Replacing the NG Tube/ Ezra Teaching Oliver to Read

Since I finished my residency several years ago, I haven't been awoken from a dead sleep to put a tube into someone.  That streak ended this morning, but fortunately I didn't have to run anywhere and nobody's life was immediately at stake.

It only took three days after discharge for Oliver to work the tube out of his nose with his random baby arm movements.  And then only three attempts to replace it in the correct place.   His little swaddle blanket served as a straight-jacket and Rachel held his squirming head in place.

Attempt 1 was properly placed but failed due to inadequate tape adhesion to the little guy's face.

Attempt 2 resulted in the tube not being taped at the correct length (Oliver: "Daddy, please put your glasses on next time.") Don't tell our pediatrician that it was only halfway through the feeding that this error was noticed (no harm done).  At least this finally prompted us to find the stethoscope that was sent to us to help confirm placement.  (See here if you are really interested in learning about confirmation of correct placement of an NG.)  And no, my stethoscope is not at home and I'd probably need to autoclave it before using it on my son.

Attempt 3 while I took Ezra to school, Rachel gently advanced the tube a little bit and re-taped it, all while he was asleep.

We'll see how long this one stays in place.

Everything is going well otherwise and Oliver seems to be "chunking up" as Mommy puts it.  Fortunately, his monitor has only alarmed a few times, mostly due to excessive squirminess.

Liberated from tubes...temporarily.

On a separate note, in preparation for Oliver's arrival, Rachel creatively tried to prepare Ezra for the significance of the event.  Out of all of her efforts, at least one stuck really well with big brother: The idea that someday (I think very soon, in E's mind) he'll get a chance to teach Oliver to read.  So even right now, when Ezra's attention is called to his little brother, he announces, "I'm going to teach Oliver to read!"

You may know about Ezra's reading ability.  He has demonstrated a very innate understanding of phonics that dates back to before he was two, which is a source of continual fascination for us.  We've been asked before, "How did you teach him how to read?"  and "Did you use (X product advertised on the radio) to teach him that?"  Usually, the question comes from a well-meaning parent of a "neurotypical" toddler.  The assumption behind the question is natural.  Don't we all need help to learn how to read?  Apparently, not Ezra!

My internal response to the question is a question: "How did you teach your kid how to point at the balloon and look at you?" or "How did you teach your child to say hello to you most of the time when you walk in the room?"  The former skill of alerting another person to a stimulus/sight through non-verbal skills is called joint attention.  The relative lack of this usually innate behavior is thought to be a key deficit in children with autism.   

Right now, I'm typing away at a free wi-fi spot while I wait for Ezra to finish school for the day.  We are fortunate to send him to a school where he receives one-on-one ABA therapy throughout the week.   The Holy Grail for autism would be to identify specific preventable factors (see this for one example, although the results need to be confirmed).  However, once autism spectrum disorder is suspected, interventions can serve as "secondary prevention," hopefully preventing the "complications" of the disorder.  Although there is no sure way to prove it, we believe this therapy has been quite beneficial to Ezra and there is an evidence-base to suggest that early intervention in toddlers with autism can make a very significant difference (in terms of learning to function socially).  Indiana is one of a minority of states that mandates insurance coverage for autism therapies, for which we are eternally grateful.  The therapies may be the difference between Ezra wanting to read by himself versus sitting down with his little brother one day to help him read. 

(Rest of post is mildly political...)

This is why my heart broke today when I read this story about workers at Indiana's Bureau of Developmental Disabilities Services telling parents to drop their children with significant developmental issues off at homeless shelters.  The children/young described in the story are, for the most part, past the point of "secondary prevention,"  (although not entirely) and most will presumably need intensive services for the rest of their lives.  There may be more to the story, but the basics of it are not too surprising.  There is a long waiting list for Medicaid-waiver services to cover the day-to-day support that older children and adults with developmental disabilities may need and funding for the services has recently been reduced.  I don't stand in judgment of the front-line caseworkers in these situations.  I'm certain that many of them are heartbroken, too.

I'm not certain if there are data out there to support this, but with knowledge of the benefits of early intervention, I firmly believe that stories like this can stimulate an opportunity for the state to support early intervention programs in a more robust manner.  I'm guessing it would be an economic plus for all in the long-run: added cost on the front end, but fewer kids requiring long-term services, fewer families in economic ruin, and (if the stereotype of autistic adults being very honest is true), more taxpayers in the economy!  I really don't think it's a leap to suggest that money would be saved in the long run, and money talks, even though it's the child's outcome that is the most important.  The main barrier to the development of early intervention programs is that they require a high volume of specially trained individuals which I'm certain the state currently lacks. 

I'll step off the soapbox- thanks for listening and understanding my passion, even if you don't agree with the politics.

Joy: Being Home at Last

This afternoon, the four of us piled into one of our compact cars (one adult in the front and one in between the two little ones in the back to monitor Oliver's respirations during his first car ride).  Starting point: Clarian North.  Ending point: Home.  A joyous autumnal ride. 

Oliver continues to breath comfortably.  Nothing has changed since my last post.  However, because of his misbehavior on day 0 of his life and his diagnosis of laryngomalacia, he has been sent home with a cardiac-apnea monitor which will be used when our eyes are not on him (mostly when we sleep).

So tonight I pray for Oliver and all other infants on similar monitors: May the alarms sound infrequently and may they all be false.

Nature v. Nurture/ Finding Value

Oliver is 10 days old today.  Here's what we know:

1. Oliver still isn't eating well by mouth.  He'll suckle vigorously on a bottle for a brief time, but then  his breathing becomes noisy quickly.
2. It's therefore no surprise that when he had a swallow study, the speech therapist assessed him to be aspirating milk into the lungs.  When the milk was thickened, he did not seem to do this.  Now, his milk is being thickened with rice cereal.  Mouth feeding attempts are being limited to a small volume and he's still receiving NG feeds for the rest.  Rachel practiced putting the NG tube in yesterday (it will probably be changed at home once per week and as needed).  Oliver will be following up with a speech therapist at Riley Hospital for Children.
3. While there isn't consensus regarding his feeding difficulties amongst his providers, most seem to think that his laryngomalacia is the main factor causing this (rather than a neurologic issue).  
4. It's very clear that Oliver's hearing is not normal.  He doesn't startle to loud sounds as a baby should, and doesn't seem to respond to voices in any way.  He didn't pass his hearing test in either ear.  He'll undergo further evaluation of this in the coming weeks.
5. Oliver has had a number of tests to evaluate for other conditions, and thankfully, they have all come back normal.  He's acting like a normal newborn now, other than the issues above.
6. Oliver's GRCS has always been quite high and continues to rise. (See below for more explanation.)
7. We're still anticipating his discharge to home early in the week.

What we don't know:

1. How soon he'll be able to eat by mouth alone.
2. The severity and permanence of his hearing loss. 
3. Probably a lot of other things.

As parents, we certainly know that the environment in which we raise our children will help determine what life is like for them if/when they reach adulthood.  At the same time, we also know that there are many factors that are out of our control.  I think our experiences with Ezra and Oliver have forced us to face this truth more acutely than we might have otherwise.  I've admired how Rachel has worked to make sure that Ezra has the appropriate resources in place to maximize his potential, and I'm sure she'll do the same for Oliver.

What's the goal of parenthood?  Is it to help our kids be productive members of society when they are older and realize their "potential?"  Certainly, that's a reasonable goal, but not likely the one that is most important.  At a more basic level, the goal is to make sure that they know they are valued by those around them and help them find value/meaning in the world around them, even if it means that they'd rather go to bed with numbers than a stuffed animal! 

Disclosure: Not a nightly routine.

Which brings me back to the GRCS, or Grandma Rated Cuteness Score.  This may sound like a subjective concept, and it may be.  What's more important, however, is that it has been hypothesized* that the GRCS strongly correlates with the level of support that the child's extended family provides, which correlates with outcomes in the goal mentioned above.  In Oliver's case, the level of support has been high, and therefore, under any circumstance, his prognosis is excellent.

*By me.

Coming Home Next Week

We found out today that Oliver's anticipated discharge date will be Monday or Tuesday of next week.  He will come home with a nasogastric tube for feeding.  We're going to enlist Ezra to help with recording of the volume fed and weights once he comes home.  I'll be on vacation (or staycation, if that's in your lexicon) next week. 

Over the next few days, we'll receive training on his NG feeds.  He will be on a cardiopulmonary monitor when he goes home, but this is just a precaution because of the event that he had when he was 5 hours old. 

Oliver continues to take only small amounts via bottle. 

Evaluations are ongoing.  No unifying theory has been proven.

Thanks again for all of your support.

"It's All Up to Oliver"

Thanks to everyone for their congratulations and support.  Oliver remains in the hospital tonight and his condition is stable.

As you can see from the picture, he still has a tube in his nose through which he is fed mommy's breast milk.  He is taking a little by bottle with each feeding, but is still learning the coordination and he tires easily.  We're starting to get the sense that this may be a longer process than initially anticipated.

Oliver has had several tests that have come back normal and he seems to be more cute and cuddly by the day.  Unfortunately, he hasn't passed his hearing screen yet.  This is reason for concern for us because he doesn't seem to startle to loud noises like most newborns do.  More testing will come in the future for this issue.

Since Oliver has more than one issue going on (trouble feeding, laryngomalacia, possible hearing problems), he's going to have some further evaluations to make sure there isn't a "unifying theory."  Occam's Razor is important in the art of diagnosis, and right now, we're waiting to see how sharply the razor will cut. 

Many of you know that our almost 4 year old son, Ezra, has mild autism.  When Grandma brought him to the hospital yesterday, he asked to "go to floor 3" which is where the NICU is located.  He hadn't met Oliver yet and we knew that he couldn't come back to the NICU room because it's RSV/flu season.  Ezra has mentioned Oliver frequently in recent weeks, and Rachel has taught him to answer the question "when will Oliver be here?" by saying "it's all up to Oliver." When I showed Ezra a picture of Oliver the other day and asked who it was, Ezra said, "Ezra when he was a baby!"

Fortunately, with the help of Oliver's nurse, we were able to bring Oliver out to the waiting area in a crib so that he could meet big brother and prove his existence.

In typical Ezra fashion, he looked over his brother and decided that the pulse oximeter (measuring Oliver's oxygen level and pulse) was more intriguing.  That's what is he looking at in the picture.

When Ezra was diagnosed with autism, there was definitely an adjustment period for Rachel and I .  Here's a passage that has been comforting:

Welcome to Holland


By Emily Pearl Kingsley

When you are going to have a baby, it's like planning a fabulous
vacation trip to Italy. You buy a bunch of guidebooks and make your
wonderful plans...the Coliseum, the Michelangelo David, the Gondolas in
Venice. You may even learn some handy phrases in Italian. It's all
very exciting.

After months of eager anticipation, the day finally arrives. You pack
your bags and off you go. Several hours later, the plane lands. The
stewardess comes in and says "Welcome to Holland".

Holland???”, you say. What do you mean, Holland? I signed up for Italy!
I'm supposed to be in Italy. All my life I've dreamed of going to
Italy.

But there's been a change in the flight plan. They've landed in
Holland and there you must stay, the important thing is that they
haven't taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole
new language. And you will meet a whole new group of people you would
have never met.

It's just a different place. It's slower paced than Italy, less flashy
than Italy. But after you've been there for a while you catch your
breath, you look around and you begin to notice that Holland has
windmills, Holland has tulips, Holland has Rembrandt's.

It's not clear where Oliver's plane will land and we're anxious to find out.  It's all up to Oliver, and we'll follow his lead.

Welcome to the World, Oliver

Oliver Louis was born on Thursday, October 14 at 1:32 AM. He weighed 8 lbs 11 oz at birth. The delivery went well and Rachel is doing well.

Oliver seems healthy overall, but he's had some noisy breathing and hoarseness. To make a long story short, he was evaluated by an otolaryngologist and has been diagnosed with laryngomalacia. (See a description of laryngomalacia at this site and this site.) This was diagnosed via laryngoscopy. On the test, both of his vocal cords appeared to be moving.

Currently, Oliver is breathing on room air and has never needed any oxygen or other support for his breathing. In order to eat well by mouth, we all need to be able to coordinate this activity with breathing. Oliver is still learning how to coordinate these activities. He is not breastfeeding well right now, and has needed some feedings through a small tube that goes through his nose to his stomach.

Today, we're celebrating the fact that he was able to take a bottle of milk overnight by mouth- the first time he has done this.

He is currently in the NICU at Clarian North under the expert care of the Riley's physicians, nurses, and other staff (for whom we're very grateful). We anticipate that he'll be there for at least another couple of days (and perhaps a little longer).