Thursday, March 29, 2012

Movie #2!

Spring is here, and so is the March of Dimes!  YEA!  Our family of five is walking again this year, and would love your support.  We have big goals and a really short timeline, the last few weeks have been a little, um, busy :)  But with your help, I know we can do this!

Actually, this is an excellent day for the Byrne Family... it's been exactly two years since Samuel came home to stay!  Unbelievable!  So, while it's a lot late to start fundraising, there couldn't be a better time to talk about what the March of Dimes means for our family...

Three years ago our eyes were opened to a world we knew nothing about.  We became parents!  There is nothing like it!  Our eyes were also opened to the world of premature babies.  Again, there is nothing like it.

A picture is definitely worth 1,000 words!  Please click here to watch our new video.  What a ride it's been!

Our NICU story is still posted too... you can watch last year's video by clicking here :)

As you know, our family has had our share of hurdles (and miracles!).  The March of Dimes does many things for babies, just a piece of that is research about the causes of premature births and treatment for babies who are born too early.  Just one piece of that research is medical advances for premature lungs, which is one of the main reasons our babies are still with us... and doing so well!

As you might imagine, this is more than a fundraiser for us.  This is a chance to give back to the organization that made a difference in our lives.  We truly hope you will consider one or more of the following:

  • Make a donation!  Click on the link on the right side of this page, or here.
  • Join us to walk!  Regardless of what you're able to give, please come march with us!  Our team t-shirts are blue tie-die :)
  • Join our team fundraising efforts!  Join The Early Birds in raising money for babies!  (From the link above, you can also Join Our Team and create your own personal fundraising page.)
  • Forward this to others!  Please send out our youtube and fundraising page to others!

Every day, thousands of babies are born too soon, too small, and often very sick.  We are walking in March for Babies because we want to do something about this.  The money we raise will go directly to programs and research... $.93 of every dollar to be exact.  It will also help to decrease the changes another baby will have to be in the hospital for 14 months, away from his family, like Samuel.  Please join us.

Thank you for the support you have already shown our family!  The loving thoughts, prayers, and words from our family, our friends, and our community lifted us up during some very down times.  Olivia, George, and Samuel are more special than we ever could have imagined.  We absolutely love being parents!

Saturday, March 24, 2012

Nevermind, This Cold Stinks

For the second post in a row, I'm glad I wrote the last one when I did...

For the third Monday in a row, things have gone wrong...

For the fourth March in a row, Samuel has been in the hospital...
  • March 2009 still in the NICU,
  • March 2010 in the PICU (after five days at home he took a helicopter back),
  • March 2011 in the hospital to get his trache out (yea!),
  • March 2012, this past Monday, he took his second helicopter ride and went back to the PICU.
Luckily this stay was short, and things are so much better now, but the 24 hours between midday Monday and midday Tuesday were awful.  That cold I wrote about got the best of Samuel.  He was handling it fairly well last week, and even went to his morning school last Thursday and Friday with his oxygen.  As soon as he walked into the classroom his smile was a mile wide, and his teachers said even though he seemed a bit tired he participated.  On Sunday morning, Samuel had so much energy DB and I were commenting that our boy was back!

 From Sunday morning, full of energy, smiles, and mischief!

Then came Sunday afternoon, and it was not good... Samuel woke up from his nap with really low oxygen sats.  It took more oxygen then normal and extra meds and what felt like a long time to pull him back up.  But, by evening things seemed to be okay.

Monday morning things seemed pretty good again!  But then came Monday afternoon... when Samuel woke up from his nap, things were terrible.  A shade of gray/blue that toddlers just shouldn't be.  Rachel was at the house, and I'm pretty sure he scared her to death... I know he scared me.  (I've already begged Rachel to forgive him :) )  One call to the pulmonologist, we had spoken the night before too, and we were off to the local ER.  I was actually pretty panicked, I used all the tricks we had at home and couldn't get Samuel to a decent place.  That hasn't happened since the first week he was home... since then, I've been able to manage, even if it wasn't pretty.  What an awful feeling.

The first time I cried was when they told me he would be transferred to our main hospital by helicopter.  I think for two reasons, one being that meant I couldn't go with him.  We would have to watch him take off, head home to get a car since DB would stay with George and Olivia, and then drive by myself... knowing that entire time he would be without his parents.  Ugh.  He's now old enough that he cries every time I leave his bedside.  Although, I heard later from the flight team that he tried to look out the helicopter windows :)

I think the second reason for the tears was when they decided he needed to be airlifted, the severity of the situation became more real.  I know, sounds ridiculous, I guess our tolerance for emergencies is maybe a little too high?  Nah, some normal bumps and bruises still make me jump.  Who knows, but I do know that's when things sank in.

We were very lucky, after 12 hours of continuous nebulizers and a ton of oxygen, Samuel seemed to be on the mend.  The crazy part is that after all the tests came back, the only thing Samuel had was a cold.  Literally, a virus that is so common we all get it, but probably don't know it has a name because it's not something we would go to the doctor for.  There are also 100 strains of it, so no vaccination.

By Tuesday afternoon he got to leave the PICU and head to a room in the step down unit.  YEA!  By Wednesday afternoon, we were headed home.  So thankful!  Also thankful to have such great friends at the hospital :)  Every visitor was amazed at our big, handsome, funny little man.

The last couple days have still been a roller coaster of good hours and not-so-good hours, but nothing we can't manage from home, yea!  Those feelings I mentioned in the last post of "why do things have to be difficult for Samuel" definitely creep back.  Then, you spend some time in the PICU, and quite honestly realize how lucky you are.

 By Tuesday afternoon, Samuel was looking much better :)

Hi fish!
Once Samuel started to feel better, a little walk around the hospital was a welcome adventure!

Friday, March 16, 2012

Just A Cold... Kind Of

So I have to say, I'm really glad I wrote that last post when I did... about ending what could have been emergent with a best case scenario.  Before I go any further, I do realize this week could have been so much worse, and is for other children and families... but for my family, it was a rough one.

Today I found myself asking for what feels like the millionth time, why does it have to be so hard for Samuel?!  Said with tears, said with anger, said with fear, and said with the purest purpose of really wanting to know.  Again, it wasn't an awful week... it just shouldn't have to be bad at all.

Kind of funny, as I'm sitting here writing this I've having some serious clarity... and kind of laughing at myself.  Really?!  THIS day was that bad?!  Seriously self, get over it.  Well, thanks, I am.  Gotta love blog therapy!  Wow, I'm smiling :)

So, what actually happened?  A cold.  A simple cold.  Before you think I've really lost my mind, for anyone else it would have been a simple cold, but for Samuel, it's been so much worse.  Early Tuesday morning, the onset of the cold came with serious sweats, shaking, and worst of all oxygen desaturation.  We pulled him out of the 60's with lots of o2 and some extra albuterol nebulizers.  I hate watching Samuel turn colors, it's just not okay.  But I am really happy we know how to fix it!

My crazy happy boy with a cold, ugh.

From there it's just been hard watching Samuel not feel well.  It just doesn't seem fair that he has to trail around an oxygen cord and that his lungs have to work so hard to breathe.  Ugh.

Like I said, after I write it all out, I really know things could be worse.  I just hate watching things be difficult, things that shouldn't be, like breathing... it just shouldn't have to be.

Back to the catch up portion :)  More photos!

 My boys at school :)

Shopping for Valentine's cards for our classmates... looking at this, 
I completely get the old "buy two get one free?" joke that comes up so often.  Ha! 

 This photo isn't actually a very good picture - no one's even looking!
But, it makes my heart so happy... it's not very often all three of my babies play together, and to catch them in the act is even more rare.  I could stare at this photo all day...

Some pre-op photos from a few weeks ago... you can see why nurses love working with this kid :) 

  Samuel was his normal, hysterical, find joy anywhere, self! 

 Samuel had a quick follow up appointment on one of our days off school, so the entire family went.  This was one of George's primaries from the NICU, love it!   I think they still love each other :)  We got to see quite a few old friends that day.  Seeing these amazing folks makes my voice crack and my eyes water every time.  They were with us through the thick of our scariest months, and they do that every day they go to work with babies and their families.  They amaze me!

Playgrounds get more fun every day! 

 Who is that grown girl?!

 Happy Birthday, daddy :)

Thursday, March 8, 2012

Good ending!

Go figure, despite the drama of this week, the results really couldn't be much better!  Well, except for no drama in the first place, ha!

On Monday Samuel had a reaction from the surgery I mentioned before... three weeks post-op, and has a reaction!  Let's just say it started off as a very possible emergency, and after being admitted to the ER at MUSC, and undergoing a few tests, the worst of the worst was ruled out.  Yea!  No emergent surgery!  

Within another hour, the worst infection was ruled out, yea!  And by Wednesday, the other infections were ruled out, too.  Whew!  What started as a potentially severe situation worked it's way down to a reaction that will heal itself over the next 4-6 weeks.  

I know, not a lot of details, but the reason I write all of this is because wow does it feel good to be ending this story with the best case scenario!  Woo Hoo!  Go Samuel :)

Since I'm in catch up mode, a few more great photos that have nothing to do with this post but I've been meaning to include in the blog, ha!

Woo Hoo!

Have you ever seen happier boys?!

Whew!  A quick rest... I think Samuel is comfortable :)

And they're off again!

Family photo time!  Love this one of Josh and Kristen :)

Love this family of five!

 And love these cute tushies :)

Thursday, March 1, 2012

Where to start?!

Where to start?!  It's been entirely too long since I've blogged, and not for lack of material, our house has been just as crazy and wonderful as ever!  I'm not sure why... I think it might be a combination of things... or maybe I just needed some good sit-on-the-couch time :)

I've had a lot of ups and downs lately, kids health is fine, I'm talking emotionally.  And, I think I'm having a tough time organizing my thoughts.  I know, sounds silly, this is the healthiest and I'm pretty sure happiest my kids have ever been, which of course also means DB and I are thrilled!  Maybe I've just had more time to think?  Maybe more specifically to reflect?  Sometimes when things get really busy or overwhelming you just go, you just do... so maybe now that things are a little more predictable my brain is in overdrive.  I don't know, it's a theory.

Don't get me wrong, we're still busy :)  Of course weekends are fun, but now we're on a much better daily afternoon schedule so I get more time with the kids.  In addition to outside play and visiting Omi at her office, we also run errands together (all four of us), at least three times per week (Julie, do you love it?!).  Their favorite is the grocery store due to it's race car themed carts, in fact we've had a tantrum or two when we pass it and don't have time to stop.  Hilarious! I love the smiles I get as folks pass my cart filled with three kids, and of course the comments about what a crazy parent I must be to take three 3-year olds to the store :)  I guess it's all a matter of perception, a little over a year ago I craved the day I could take Samuel to the store without oxygen and fear of someone touching on him.  So, three babies with no oxygen seems manageable... most of the time.

My other theory is along the same lines of my brain being in overdrive, but stems from Samuel's new schools.  The last month has been incredible!  The timing of switching to the new programs was lined up for exactly when Samuel was ready - amazing.  He is doing so much!!  Talking more, babbling, making choices, following directions, and even biting into crunchy foods!  Of course, the food is crunched then spit out immediately, but hey, it's huge progress!  All of this has my brain whirling... what else is out there that he's ready for?!  How do I incorporate some new things that are working at school into our home routine?  And of course the ongoing question, are we doing everything we can?  That answer never quite feels like 100% yes... sigh... is that a normal parent feeling?

That's my babble for today... it's where I am, it's how I'm feeling, it's part of our story.

Another part of our story is being outside!  A few photos from a park visit a few weeks ago... okay, maybe a few months.  Man, I'm behind!

 Daddy and George trying to take a photo together :)

 Omi and Samuel taking a stroll.

Mommy and Olivia shooting the breeze.