Friday, October 30, 2015

The Mango Memoirs

If you're not reading The Mango Memoirs you should be.  It is a sweet little blog about a beautiful family whose second child happens to have Down syndrome.

Angela does Down syndrome awareness month much better than I do.  Each day she has featured words from a family who has been blessed by Down syndrome. 

Yesterday she used her platform to share my words, to share my story.  

My sorrow at learning my beautiful perfect daughter would have Down syndrome.  And my joy at getting to know my beautiful perfect daughter who just so happens to have Down syndrome.

If you're so inclined you can read the post here.  And if you've got some time read all the posts from October.  They are all beautiful.  

Tuesday, October 27, 2015


For someone who wanted to participate in Down Syndrome Awareness month I sure dropped off the face of the planet didn't I.

Sometimes I get too busy wrapped up in the proper care and feeding of my tiny toddler (and I do mean tiny, she's still in 6/9 month clothes) to leave room for anything else.

October has been no exception.

And it was a big month for us.

Lily got her tonsils out and ear tubes put in .

I'm not entirely sure why it changed, but in August things changed for Lily.

She had lots of instances of strep throat and tonsillitis last winter.  And every one who looked in her throat when "Wow, her tonsils are HUGE!" But around August they became an issue.  Her breathing became noisy and congested sounding without any mucus to explain it.  She completely reverted in her feeding therapy to bottle fed all the time, refusing her straw cup and eventually all food.  She started snoring and having episodes of sleep apnea.

We saw two different ENTs.  They both agreed.  She needed her tonsils out.  Ordinarily they wouldn't do it on a child so young, but her history of infections combined with the deterioration of the situation made it necessary.

Coming out of anesthesia was rough on a baby.  She felt off and squirmed and flailed and thrashed.  It was a very helpless feeling trying to hold her while she threw herself back and forth.  A dose of pain reliever and she calmed down.  She refused all clear liquids so they agreed to let her have milk in her bottle, which she drank right away, which was a good sign.

The Pediatric ICU was not prepared for Lily.  It is a place for sick children.  Very sick children.  And Lily on pain meds was not a sick child.  She was an active happy running around child.  

She owned the ward.  She was supposed to be on monitors the entire time, but the cords were too short to allow her any mobility, so they agreed to take her off the machines and hook her up once an hour to check on her.  

They were in a hurry to discharge her.  The nurses tried to talk the Surgeon into releasing her that afternoon. 

He didn't think that was such a good idea.

So overnight we stayed.

We had a bit of a rough night with the blood pressure cuff waking her up every hour on the hour.  She got pain meds every four hours but they wore off after three hours.  So that last hour waiting for her next dose was rough. 

The next day I discovered two things.  

1)  She was getting Lortab, which my Surgeon said he would NOT prescribe her.  He doesn't give narcotics to children under the age of three.  I did not have a problem with her receiving Lortab.  She was on monitors.  She did just fine with the Lortab (probably why she was running around owning the ward).  I tried to talk them into sending me home with a script.  I had one in my hands very briefly, but then they changed their minds and took it away.  Since a side effect of narcotics in a child so young can be death, I was alright with that.

2) She was supposed to be getting alternating doses of Tylenol and Ibuprofen every two hours.  Tylenol at 6 then Motrin at 8 then Tylenol again at 10.  This double layer of pain meds would have prevented that fourth hour of crying where the pain meds had worn off but we couldn't get the next dose yet.  

We were sent home early the next morning and for the first few days it was fine.  She had steriods to reduce swelling and we gave her pain meds every two hours round the clock (even getting up two hours all night long to give meds).  Lily lived on popsicles 

and life was fine.

Until it wasn't.

On day five Lily started to cry.  And she didn't stop for about a week.  

Where she previously drank her pain meds right down, she now spit them on us.  She thrashed and flailed and cried.

The next week was pretty much hell.

We did everything we could to make her comfortable.  Constantly offering her popsicles and sherbet.  Giving her anything and everything to drink (eventually finding success with chocolate milk in her bottle.  I turned into THAT Mom.  I regret nothing).  We force fed her that pain meds resulting in lots of tears, many of them from me.

I wondered why we had done this to our perfectly wonderful baby girl.

But when we laid her down to sleep and she didn't snore we knew we had done something good for our girl, even if it didn't seem good at the moment.

And as her continued to heal and her sassy self slowly came back we knew this had been a good thing.

And when we took her to lunch and she ate five chunks of a hamburger and double fisted the french fries we knew it was going to be alright.

Lily is mostly back to her usual sassy self.  

And this is my favorite thing!

Thursday, October 1, 2015

Celebrate With Us!

October is Down Syndrome Awareness Month!


I get to celebrate Lily and that little something extra that makes her extra special every day.  I invite you to celebrate with us this month.

To kick it off I've got the 1025 NDSS Time Square Video.

This was played in Times Square during their annual Buddy Walk.  It isn't a short video, it is 45 minutes.  But if you hang in there (or fast forward) you might spy a certain Queen Bean at the 42 minute 19 second mark.