Thursday, November 10, 2011

Slow and Steady Wins the Race

Weight: 21 lbs 9 oz
Length: 30 inches
Chronological Age: 19 months
Adjusted Age: 16 months

It's been a while since I've given a comprehensive update on Samuel's health and here goes.

Medication:  Samuel continues to take a vitamin supplement, Flovent (steroid inhaler), and Miralax.  We have tried weening him down on his Miralax dosage, but after several days of throwing up after meals, it became apparent that he isn't quite ready for that.

Feeding:  We are thickening Samuel's bottles of Pediasure...but we've cut back on how thick we make it by half.  Hopefully, we will be able to have him off the thickener completely by the spring.  He takes 3 bottles of Pediasure a day.  Yes, he still takes a bottle.  It seems like I have two options 1) Continue to give it to him in a bottle because he won't drink it out of any other container or 2) Give up on the Pediasure and hope that I can give him enough calories through his baby food.  With as small as he still is, I think I'll stick with #1 for a while.  He does not seem to have trouble drinking water, juice, and tea without thickener...but he only drinks those with significant prompting from me.  Purees are still his friend, but he has continued to make steps forward with table food.  Not big steps, but steps. (Just recently he has seemed interested enough in our food to attempt bites.)

Dentist:  First off....can I just say UGH?  Samuel had his first appointment with the pediatric dentist this week and there were so many things wrong with the visit that I don't know where to start.  Just to give you an idea, the worst part of the appointment was when the dentist shared his opinion about why preemies tend to have bad teeth.  "Parents of special needs children (preemies) tend to be very irresponsible with their children. They spoil them by continuing to give bottles past the recommended age, they feed them the wrong things, they don't want to 'rock the boat' by changing things up. I just don't understand why they refuse to follow the recommended guidelines. I let my kid cry whenever we were weening him off the bottle and pacifier."  There were many not-nice things that went through my head at that point.  We won't be returning.  I want Samuel to be seen by someone who knows something about micro preemies/special needs kids.  Did I mention that when I told them about Samuel being orally defensive/a possible oral aversion, they said, "All babies do at this age!" (then began inserting tools and fingers in his mouth for no reason!!)  I haven't been able to get Samuel to eat well ever since the appointment....GRR.
The good news is that Samuel does not have any cavities and his teeth are looking good.
PS - I had a knowledgeable micro preemie mom give me the address to a site that explains why micro preemies have bad teeth.  Click here if you want to read it.

Synagis:  I have been battling insurance companies, doctors offices, pharmacy companies and so on to be able to get Samuel the Synagis shots again this year.  For those of you unfamiliar with the Synagis shot, click here.  I'm happy to report that all of my hard work has paid off.  He qualifies this year because he had to have 'therapy' for his chronic lung disease within the last 6 months (therapy=oxygen.)  He has already received his first shot, and will continue to get them once a month until March.

Therapies:  Samuel is making great progress with Speech.  OT is a little slower going and PT is the slowest.  It's so funny how it was the complete opposite when he began therapy in March.  It looks as if Samuel may not qualify for Speech come re-eval time, but OT and PT show no signs of coming to an end any time soon.  Honestly, I'd rather he stay in ALL three therapies until he begins school (it wouldn't hurt for him to have a head start on his school peers.)  But there I go again...thinking WAAAAYY too far into the future...

Hydroceles:  We've been keeping a close eye on Samuel's hydroceles since he came home from the NICU.  Apparently they were supposed to drain on their own within a year, but his didn't.  We thought he would need surgery to have them drained.  However, we learned a few weeks ago that his hydroceles have disappeared - no surgery! 

So that's about everything.  Can you believe it?  That's it.  After being born 16 weeks early, we are dealing with a few medicines, feeding issues, yellow teeth, and therapy.  I can't tell you how blessed and lucky I have been feeling recently.  Michael and I were talking yesterday about how frustrated I was in the it seemed like EVERYONE'S baby was progressing so much quicker than Samuel.  They were gaining weight faster, they were coming off the vent earlier, they were going home sooner.  I guess Samuel knew that age-old saying, "Slow and steady wins the race."

Or at least, he DID.  There's nothing slow about this kid now!


  1. Awesome report!! And woohoo about the Synagis!!

  2. It's so nice to hear such a wonderful update. I cannot believe what the dentist said.....clearly he has no clue what micro preemies often deal with. hope you can find a good one for your next appointment. Love that last photo. What a happy little (big!) guy!

  3. Thank you for posting the link to the synagis had some really helpful info in it.

  4. Never go back to that dentist! No matter what his personal opinion was that was not professional at all!

  5. I can't believe how rude that dentist was. It sounds like Samuel is doing great! We're fighting to get Synagis for Camdyn too. Cade qualified but she has not yet. I'm still working on that.

    Just curious - At 16 weeks early, wouldn't his adjusted age be 15 months? It always seems you write his adjusted age with a 3 month difference than actual age. It doesn't really matter; I was just wondering.

  6. Michelle - I know how confusing that must be! Here's the way I think of it.
    Samuel was supposed to be born on July the 4th of each month marks another month older for his adjusted age.
    However, he was actually born on the 19th of obviously his chronological age changes on the 19th.
    When I post, sometimes his adjusted age has changed (because it's after the 4th of the month) but his chronological age hasn't changed (because it's not the 19th of the month yet.)
    Does that make sense? I'm sure not every micro preemie mom thinks of it this way...but I guess I've never even thought of calculating it differently!!

  7. Is your email that in on here your correct e-mail?! I sent you an e-mail last week about your story!

  8. Im so sorry that dentist was so insensitive, I hope you find one that is experienced with micro preemies. Thank you for posting the link about the teeth, I had no idea. I will be asking my oldest daughter's dentist about it to get an idea on her experience. Love the picture!

  9. congrats on winning the synagis fight! don't you feel so empowered!!?? (i always think of the rainmaker movie with matt damon when i win a battle with insurance...) and good luck on finding a NEW dentist! i cannot stand ANY doctor who wants to tell me what the "norm" is - with any of my bebes! and until someone has walked the path of the micro preemie and preemie mommies - they need to have a nice warm cup of hush up!

  10. Terrible about the sensitivity or compassion of any kind. Glad Samuel is doing so well! :)

  11. That does make sense, but I guess I never put that much thought into it. I just subtract 4 months from whatever age they are and call that their adjusted age although your way is more accurate. I was just curious.

  12. Great report! I can just pray that Christiaan will also do as good as Samuel in a years time. God is so good!