Every since I had children, mornings have become my favorite time of the day.  I love waking up and cuddling with the kids first thing in the morning.  I love the smiling faces after a long night of sleep.  This morning I awoke to a cool breeze drifting in my open window, the sound of birds chirping outside and the sounding of Finley chirping in her crib.  The power of positive thinking worked!  We had a wonderful day and were so happy that Finley was able to come home.

The first thing we did when she got home?  We took off her jammies and let her roll around on the floor on her blanket in just her diaper.  Both Nate and Finley love to be naked and I know Finley was getting cabin fever toward the end of her stay - this was just what the doctor ordered!  Here are a couple of welcome home pictures of my happy girl in all her chubby goodness:

Nate is thrilled that Finley is home - he's sitting on the ground with her as we speak and he's giving her a good once over - kissing all of her boo boos, rubbing her head, saying, "watch this mommy" as he shares his blue puppy with her.

Unfortunately, we have to go through all of this again, stress factor magnified a trillion percent, for her heart repair surgery on May 11th.  For now, we are just going to enjoy every moment here as a family and start that positive thinking again!

On a side note, Daddy is taking a half day off of work today so that he and Nate can go get haircuts.  One of their favorite things to do together - Nate likes to eat the bagels and Joe's and get a piece of chocolate after his haircut and daddy likes to go and look at all of the nudey magazines that Joe has out. Oh wait, did I say that?  I meant that daddy likes to hang out with his little man.


Finally, I want to wish Mary and her daughter Leah the best of luck for Leah's surgery today - please send your thoughts and prayers to Mary and her family.  And a big congratulation to Liza who is going to become an aunt again today!  Have a wonderful weekend!

Lots of you might know about the Charge it for CHARGE fundraiser our family has been participating in and we appreciate all of your very generous donations!!!  For those of you who might not be familiar with the fundraiser - I've added a link on the sidebar of this blog.  This is the first year we've participated in the fundraiser and we are so proud of our progress.  There is only one thing.  We used to be in third place overall of ALL families raising money for the foundation and we've been bumped by a couple of kids (bless their hearts!!!).  Anyway.  The back story on that is - these two beautiful children in New Jersey recently held a fundraiser for their Mitzvah project - in honor of their brother who has CHARGE Syndrome.  All proceeds benefitted the CHARGE Foundation.  They organized it themselves - and apparently - it was a huge success because now we are in 4th place!!!  Which is awesome for them and the Foundation - but we are competitive.  And there is a lot of work that needs to be done.

The sad reality is CHARGE Syndrome isn't well known.  The Foundation doesn't receive much/any funding for research and even sadder is not too many families currently participate in the fundraising efforts.  We are trying to change that!  If nothing else, please click the link so you can read more about what exactly CHARGE Syndrome is and how it affects our family.  Afterall, one of our goals with this blog is not simply to keep our friends and family up to date - it is to raise awareness about CHARGE Syndrome.  So read it.  Then, pass it on.

THANKS!!

The power of positive thinking right?  Boy do I need it.  I am beat.  You would think that the last week might have at least afforded me some extra sleep since we aren't waking up in the middle of the night to change feeds every three hours and do Accu Checks but I actually think the combo of waking up at 1:30 am to call the hospital every night (this has been my routine since Finley was first admitted to the hospital) and waking up at 4 am so I can get to the hospital by 7 am - well that just has me out of gas!!  Hopefully today is the good day I think it will be and I will be able to bring Finley home!  Isn't there something out there that says if you make it you mantra it will come true?  Today's going to be a good day.  Today's going to be a good day.  Today's going to be a good day....


It was wonderful seeing my Princess yesterday.  After several days of being pig tail free because of the stinky BIPAP mask (and me forgetting to bring her tiny rubber bands) the piggies are back.  Finley on the other hand wasn't her happy-go-lucky self.  The amoxicillin that they started on Tuesday was doing a number on her little tummy.  When I first got to the hospital - she was pretty smiley (relative to how she'd been the days prior) but her oxygen saturations were a little lower than what we normally see with Finley - and that had me concerned.  As a brief point of reference - because Finley is a heart patient - she wears an oxygen sensor when she is at the hospital and it measures the amount oxygen in her blood (oxygen saturation).  Having watched those monitors now for so many months on end over the last 8 (almost 9 months) I have become pretty familiar with what is Finley's "norm" and you can tell a lot from those numbers.  Usually whenever Finley's are low, she's got something going on.  Needless to say Finley just seemed generally uncomfortable - didn't want to be held, tossing and turning in bed, etc. and so I was really starting to get worried until I put two and two together and after I changed like the third poopy diaper and had been hearing her pass gas all day - we sort of figured out that the princess's tummy just wasn't feeling good.  She couldn't get comfy all day so she didn't nap and was subsequently cranky.  She finally fell asleep around 4:15 pm and when I called the hospital before I went to bed and in the middle of the night - she was still sleeping!! And her oxygen saturations were back up to 90 so I felt better!

Otherwise not a whole lot of new news - I spoke with the immunology doctor who said overall Finley's lab tests didn't reveal a lot.  She had a low lymphocyte count which wouldn't be unusual for a child fighting an infection. He'd looked back to some previous labs and noted that she'd had some really good lymphocyte counts before - so he doesn't think its a big deal.  But, because of her CHARGE syndrome and the occasional issues with immune problems - which he linked to another syndrome called DeGeorges.  Because CHARGE and DeGeorges have a lot of overlapping characteristics if immune problems present themselves in kids with CHARGE (even when the actual q22 deletion in DeGeorges has been ruled out like it has with Finley) they call it partial DeGeorges.  Don't ask me why - I am clearly not a doctor. In any event - no big deal at the moment - he just advised us not to let her get any live vaccines until he can retest her - which is somewhat comical since her vaccines are up to date and we've not had any issues yet.  She isn't due for more vaccines though until she turns one and we will bring her for her follow up before her first birthday.

After a brutal commute from the hospital to pick Nate up at daycare (Mike was stuck in training) it was so good to see Nate and find out he had a good day at school - he even 'ticipated'.  Which to us means he participated in group time which we've had some issues with of late - Nate tends to like to do his own thing when he isn't interested. We've been putting a lot of emphasis on this with him at home and he has a chart that he gets to put a star on if he 'ticipates'.  Anyway, Nate was in a great mood and was in a cuddling mood so he and I had a nice evening together until I apparently dosed off on him and Mike came home.  Oops.

Anyway, today's picture of the day still cracks me up every time I look at it.  When Finley sits in her bouncy chair in the kitchen - occasionally Nate will run around and put his tush in her face and wag it back and forth and say "shake your buddha" (instead of booty).  Notice how Nate's even put his hand on the fridge to brace himself so he can really get his butt in her face.  Its a classic.

Repeat after me. Today's going to be a good day.  Today's going to be a good day.  Today's going to be a good day.

Last night before bed Nate decided he would like to have a little party when Finley comes home.  And for that party he has just one request.  Chocolate milk.  He's such a simple kid.

Seems as though we might be having a party soon.  Word on the street is that our baby girl should be coming home in the next day or two.  We've not started to make the chocolate milk yet because as we know good and well with Finley, sometimes she changes her plans.

I am anxiously awaiting seeing my little girl this morning - it was hard for me yesterday not being able to be with her at the hospital.  I am so thankful that Margaret, my mother in law, was able to be there with her and her caregiver, Gigi, also spent some time there.  The awesome news of the day is that she got moved OUT of the PICU and back up to 5W - one step closer to home! Adios PICU - next time we see you it will be too soon!

We got some other good news yesterday as well.  The lab called our nurse on 5, Jaime, yesterday to tell her they had misread the culture they took from Finley's breathing tube last week. Instead of strep and staph - the culture was only growing strep - which is a huge relief.  That being said, our little lady was paid a visit by her favorite ID docs and they took her off of the 'super strong kill all bacteria in sight' antibiotic and put her on the very harmless - amoxicillin.  YIPPEE!  It is my hope that this calms their fears a bit about how this happened and that it all makes more sense to them now.  I look forward to talking with them when I get in today.  Additionally, Finley's immunology labs are in - but no one that had the ability to read them was around when I called on my way back from my meeting so I am hoping to get some answers on that today as well.

So this morning I will be backing up Finley's stuff so we can come home as soon as they give us the word.  It will feel so, so good for her to be back home with us.

One picture before I finish.  This one has become one of my recent favorites because I think it says a lot about just how much Nate adores his baby sister.  About a week before Finley went in to the hospital, Mike and I were in her room changing out her feed and checking her blood sugar.  Just before I was about to tuck her back in, I turned to look at her and this is what I saw:

That's right folks.  Yesterday - I got my first smile in a week.  Open mouthed, tongue out.  I just kept rubbing those cheeks so I could see it as long as possible.  Finley is happy kid - so to go that long without a smile has been SO hard.  But I saw it.  If only for a couple seconds (because then the nurse came to check her blood sugar).  I don't care.  I still saw it.  And it made my day.

Lots of progress for our girl yesterday.  They took her off of high flow oxygen and put her on the regular nasal cannula and she was doing just fine.  Then, at one point, the connector to the oxygen started to go haywire and was letting off a shrill, high pitch noise.  When the respiratory therapist came in to fix it, she had to shut the oxygen off.  She was only getting 21% anyway which is the equivalent of room air.  But Finley did fine off of the oxygen.  So I called the doctor in and pointed out that she was doing just fine without it and so the doctor agreed to discontinue it.  So, our baby is well on her way from looking like this:

The doctors have also decided to do an immunology work up on Finley.  They talked a lot about the culture they took from her throat when the ENT scoped her last week (the docs were smart enough to culture the scope when it came out) and the culture is growing staph and strep.  And while those are two bacteria commonly found in the airway (or so they say) the fact remains that this is the second major infection she's had in her 8 short months (the first was the surgical wound infection she had after her first open heart surgery) and that leads them to have concerns that Finley's immune system might not be operating up to par.  Which is an issue that other children with CHARGE Syndrome sometimes have as well.  We hope to have some of those tests back today.  That being said, they've called in the Infectious Disease doctors as well (which by the way - how menacing does that specialty sound?  Infectious Disease...definitely not one of my favs).  So Infectious Disease (or ID as I like to refer to them) came by yesterday to look at Finley and basically stood around scratching their heads.  The good news is that this infection is easy to treat, its not antibiotic resistant - but its important to find out why she got it.  And frankly based on all they know right now - there doesn't seem to be a good reason.  These are things we hope to find out the answer to in the coming days.

Finally, Finley had her g-tube changed out yesterday and I told Mike, if there were an award for the quickest g-tube change - the g-tube nurse at Childrens would win it hands down!  Mind you, I've seen this done once before, by the pediatric surgeon in the ER after we had the little accident where Rosey knocked down Finley's IV pole and yanked out her g-tube.  Needless to say, that was the first time it was changed, under those circumstances, so there was blood and clearly discomfort (Finley was not a happy camper) so I expected this to be a similar experience.  Anyway, Terry (the nurse) disconnected Finley's extension set from the pump - at which time I said, "Um - she is on a continuous feed - don't you need to stop the pump?" And she said, "Nah - by the time the pump alarms I will be done" (as a point of reference - the pump alarms if its not connected after like a minute).  So then she proceeded to quickly draw the water out of the g-tube's bubble and with one hand pulled out the old button, wiped away the stomach leakage with the other and then picked up the new button, put it in and inflated all before - you guessed it - the pump alarmed.  If I had blinked I would have missed it.  It was pretty impressive!  I don't think Finley knew what happened.  There was no blood.  No tears.  Nothing.  Crazy.

Nate on the other hand got a special treat.  Grammy picked him up from school yesterday and she took him on an errand she had to run to Buy Buy Baby.  Shortly after Mike and I got home though, we heard from Grammy who was at Toys R'Us?!?  In any event, that Nate, the smooth talker that he is, came home with these:

and the Happy Meal you see him eating in the background.  A huge thanks to Grammy of course for helping us out with Nate last night!

Unfortunately neither Mike nor I will be able to go to the hospital today - so yet again, Grammy is pinch hitting for us.  Mike has training and I have a meeting this afternoon with a new client.  I am really sad about this - I have butterflies in my stomach - its going to be a hard day.  But perhaps Grammy will get the honor of accompanying Finley out of the PICU and back up to 5W where she belongs!  If that happens - it will be a GREAT day because I can tell you - there's no love for the PICU in this house.

Tomorrow it will be a week since Finley went to the hospital for those routine pre-op tests and she still isn't home!  Funny how these things happen.  Nate is missing his sister.  Last night at bedtime he said, "Its just you, me , daddy and Rosey tonight mom.  We aren't a family without Finley."  Broke my heart : o (

Nate and I had a nice day together.  Daddy spent the day at the hospital - his work schedule this week is a little hectic so he won't be able to get out to the hospital otherwise until Wednesday.  Nate accompanied grocery shopping, which is always an adventure.  Before we went, he wanted to make certain he could bring a bunch of extra big boy underwear and his Big Brother pajamas, "just in case".  He was even kind enough to bring them down and put them in my purse - here's what that looked like:

Progress is being made in room 235!

Finley had a great day yesterday.  Mike got to the hospital in the morning and Finley wasn't in the greatest spirits.  She was clearly fed up with the BIPAP mask and wanted it off.  So, the doctors decided they would let her try some "mask free" time.  The thought was that they would let her have the mask off for a while and then put it back on when she needed it.  Guess what?  She didn't need it!  She did just fine with the hi-flow oxygen via the cannula in her nose - so well in fact that the respiratory therapist, Pete, removed the BIPAP machine from Finley's room last night!  WHOO HOO!

What's next?  Well, they need to try to remove the heliox - which I thought they had done when they took her off the BIPAP.  In fact they had not.  She is still received the mixed air through her nasal cannula so the hope is that they can discontinue the heliox and just give her room air through her nose.  Fingers are crossed - not sure what will be done this weekend yet as there aren't too many doctors around.

Also, a huge thanks to Gina for visiting us yesterday and bringing Scooter's frozen custard!  YUMMMM. I joked (but was pretty serious) about that fact that this is turning out to be a fattening hospitalization for me - cake from our 5W nurses on Thursday, Godiva chocolate from Finley's NICU pal Leah and her mom Mary on Friday and Scooter's yesterday.  Time to get my butt moving!

Well. Here it is.  The Roth Family blog.  Lots of people have asked us to do this - and because we appreciate your interest/concern/etc. it has come to fruition.  Perhaps a little sooner than planned.  My goal, was to have this up an running for Finley's scheduled heart repair - which is/was supposed to be May 11th.  The current status of that surgery is now unknown.


Finley was admitted to the hospital this week for some routine pre-op testing.  A normal child would not have required an admission for this, but our little Finley is special and because of her blood sugar issues, she had to be admitted overnight so that she could be put on IV fluids and go without food for the anesthesia she needed for the CT and echocardiogram she was to have Wednesday.  Well, Finley had other plans.


Finley had a great day Tuesday - had her first swallow study since she was three days old and she got clearance to start baby foods and cereal! Then she had an abdominal ultrasound, as a follow up to Saturday's ER visit and the ultrasound was inconclusive.  Wednesday the fun began.  The anesthesiologists had a difficult time intubating Finley and ended up having to use a very small tube that is normally reserved for premature infants.  After the CT and the echo were done - they called Finley's ENT in to have a look at her to see if he could determine why they had problems getting the tube in.  When the doctor did the bronchoscopy, he found that he airway was 75% closed off - he believes due to scar tissue that had formed as a result of previous intubations as well as an infection.  Its a condition called subglottic stenosis.  In his words - he's never seen anything quite like this (he's seen subglottic stenosis - never quite like Finley's).  And, coming from a doctor as well known and well respected as Dr. Holinger - that is NEVER a good thing.  Needless to say, she was immediately admitted to the Pediatric Intensive Care Unit (PICU) and she has been there ever since.  So, you can imagine my shock/horror/dismay to get a call from Mike Wednesday afternoon after having expected her to come home that day and instead find out she is in the PICU, where, quite frankly, although that is where she went to recover from her first heart surgery, we associate mostly with her admission for her post surgical wound infection in her chest.  Not a good memory.


The good news is, Finley is making some slow progress.  We've not seen her gorgeous little face since Tuesday really because since she's been in the PICU she's been attached to a BIPAP machine via a giant mask that covers most of her face and which is forcing air down her throat (literally).  They are giving her this thing called heliox which is a combination of helium and oxygen - since the helium is a lighter gas than the oxygen - it binds to the oxygen particles and carries them more easily through her airway.  As you can imagine, the mask is terribly uncomfortable for her so they are keeping her sedated - she has woken up a couple of times in a fighting mood and tried to take the mask off - this never makes for a good situation because it usually results in her dropping her oxygen saturations, etc.  Fortunately, Finley behaved all day yesterday so the docs are thinking about giving her some "mask free" time today and see how she does without the heliox.


So, this is really where things are now.  We aren't certain if Finley will still have her heart surgery on May 11th or not.  It may be sooner, it might have to be later depending on what happens in the next couple of days.  There has been some discussion by her cardiologist and cardiac surgeons as to whether it makes sense to send her home if she recovers and instead just do the surgery early.  Then, there is also the possibility of her needing to have surgery on her airway.  The decision on that is on a day to day basis.


So far, Nate is handling this as good as can be expected, however, with each hospitalization, things get a little harder on him.  When Finley was born and spent  most of her first four months in the hospital, Nate had never really gotten a chance to know his sister so it didn't seem as difficult.  He has definitely grown attached to her though and know she's not here, asks questions, and does the sweetest things - like last night when we went upstairs for bed.  When we got to the top of the stairs, he went into Finley's room and kissed her IV pole and said, "I love you Finley." And then he said, "Mom, I miss Finley.  Finley is my best friend."  How sweet is that???


Well, I think that is all for now.  I've done it.  I have finally started this blog. Phew.