Sorry its been so long since I've updated - last week was sort of a rotten week from a health perspective (mine - not Finley's!) so I am glad to put it behind me!  The headache I mentioned in the last post, well that ended up finally breaking on Day 7 - just in time for the cold to arrive - and Nate got it too.  I felt so unbelievably miserable Saturday - and I couldn't take anything because I am still pumping.  Needless to say - my goal was to wage war on that cold Saturday and happily - it worked.  I was popping zinc melts like clockwork, every three hours, doing Sinus Rinse and as per my girlfriend Gina - downing raw garlic before bed.  Sunday - I woke up a new person and even found it in me to go for a run - something I hadn't had the energy to do since my 5K the week before.  And I was even better (healthwise) Monday - just in time for my least favorite day of the week!  UGH.

Nate as his 2 year old birthday party

Finley had a wonderful weekend - she has been chatting our ear off with the Da-Da-Da-Da.  We're still working on the mama.  She goes to the cardiologist tomorrow so I am anxiously awaiting that appointment and the echo because I am praying that the medication is still working on her pressure in her valve.  If I were to go solely what she looks like though - I would say that she's better than ever - we will see!  We went to the neighbor's graduation party on Sunday and she had a great time - EVERY single person who came up to us said, "Oh my God - look at her hair".  Hahaha.  Its gets to be quite funny after a while.

Finley at just under 2 months old - proof that she had a lot of hair from day one.  Also one of her last pictures with the NG tube.

Nate on the other hand. He had a rough Saturday - and for a kid who is pretty generally happy-go-lucky and not generally a problem - he simply was not himself.  I think that it was mostly attributable to him not feeling good also - boy was he a handful though.  It seems like he spent most of the day in timeout.  He was going to go with his dad late in the afternoon for a haircut but there was no way he was in any mood to go out much less behave.  After a really long nap, he started to come around.


And a huge congratulations to my sister-in-law Andrea and her husband David who welcomed their first child, David, over the weekend.  David was 7 lbs and 9 ozs and 19 inches long.  Grammy and Pop-Pop were so lucky to be able to be with the in Seattle for the birth.  We can't wait to meet our new nephew!

Finley's first NG tube free picture - this was right before she went down for her malrotation and g-tube surgery.  Look at that beautiful face!

And so we are looking forward to the long holiday weekend. I am looking forward to getting out of ERRP hell at work (Early Retiree Reinsurance Program - my least favorite part of Health Care Reform) and we are all looking forward to a nice 4th of the July celebration at our good friend Eric and Andi's house and finally being able to meet their little man Eamon - who isn't so little anymore (he was born in November).  Its nice to be post-surgery and be able to start doing these things again and seeing our good friends who we haven't seen in so long.

P.S.  Thanks for bearing with my old school (sort of) pictures - the camera cable should be on its way!!

Sometimes it just takes that extra little push to motivate you to do something you have been putting off for too long.  A couple of weekends ago I mentioned that I was going to put Nate's potty chairs away - but I hadn't got around to cleaning them thoroughly for storage, hadn't thought about where I would store them etc.  Needless to say, last night Nate took his potty seat downstairs to go to the bathroom and when he was done - he called me down there to wipe his tush.  Well, unfortunately for me, Mike left the wipes contained empty so I had to tell Nate to stay put while I ran upstairs to refill it.  When I opened the door to head back downstairs - to my absolute horror - there was Nate - wiping his butt on the carpet on my stairs. WHAT?????  I was speechless.  And angry.  Seriously?  I brought him upstairs for a time out - and I was the one who ended up feeling horrible because he was SO upset by my reaction.  This house will soon be potty chair free....

Finley had a great week.  She starting lifting her head up while laying on her side, sitting in her high chair, and to my dismay - she started saying her first word.  Dadadadada.  She also started saying Lalalala (but that one doesn't count).  I had to go in to the office yesterday and when I got home - Gigi told me she started saying Dada. I said, "Nah".  I truly thought perhaps she was uttering something nonsensical that sounded like Dada.  Then I heard it - plain as day.  DADADADA.  In any event - I was thrilled. June has been a month of big milestones for our princess!

Her feeding therapist came over on Tuesday and has arranged to be here weekly through the end of July when her feeding class (the therapist's) resumes.  I had asked our Early Intervention coordinator if we could go to weekly feeding therapy sessions with Finley since she had started taking baby food and so we are happy to have her once a week for now - even if its just through the end of July and then Finley has to go on a waiting list for weekly appts (our feeding therapist is popular).  The therapist, Erin, reviewed Finley's swallow study results and came up with a new plan for feeding.  Finley is a little adverse to the spoon and her swallow study showed signs that she was aspirating without swallowing - meaning her tongue wasn't making a correct motion to block the food from just sliding down her throat.  So we need to work on tongue control and strength and so we are now using a combo of a syringe and a spoon to feed her.  We are using the syringe to put the food in her cheek and so then she has to actively use her tongue to move the food out of her cheek and swallow.  I always get such a kick out of watching Finley eat because in spite of her colobomas and vision loss - she sure has no trouble seeing that spoon coming and turning her head when she doesn't like what she's having!  I took a couple of pictures in her high chair today....

Which brings me to my next announcement - yes - I had to break down and buy a new computer interface cable for my computer so I won't have to torture you with my old school pictures anymore.  I few of you (yes - you know who you are!) have been quite vocal about my need for a new cord and so its on its way.

And so today marked the end (or what seems like the end) of my 7 day headache. Its been quite the week - I even broke down and went to the doctor on day 5 (I NEVER go to the doctor - I figured while I was at it thought I made an appt for a physical too!).  The doctor prescribed some migraine medicine, which I didn't have time to fill until a day later.  I took one of those pills last night and didn't think it really helped much, but this morning's headache was pretty mild and I was able to knock it out with some Excedrin eventually.  And now its been gone for a few hours.  Good riddance!  Now, it left just in time for this cold I have now.  Yep.  Nate and I have the dreaded summer cold.  Would someone like to tell me how - after spending all of that time at the hospital with Finley - during cold and flu season - I NEVER got sick.  And now that its the middle of the summer, and she has been home for three weeks - I have a cold?  Ugh is all I can say.

Hey Facebook users!  You see that Chase Community Giving link posted on the right side bar of this blog?  Do me a favor and click on that link and submit a vote or two or TWENTY for the CHARGE Syndrome Foundation.  At the end of the voting CHASE makes donations tot he charities that receive the most voters.  WHAT ARE YOU WAITING FOR??  Start voting!

Simply by virtue of the fact that we just don't have time to get things done around here - Nate is still using his "porta potty" all over the house.  And that being said, it is still providing us with comic relief.  He just had it in the living room, behind the loveseat by his toy box while watching his DVD player.  That's right.  All of that AND he still had time to worry about what the dog was doing because ever since Rosey raided his potty chair once and ate his poop - he hasn't been the same since.  He is constantly paranoid when he is going to the bathroom and Rosey is around.  Needless to say - his potty time just became a family event.

And Finley?  Well Finley was just a tremendous ball of energy today.  I sat in the dining room working all day and I just listened to her chat with Gigi in the den all day long.  She was squawking at the top of her lungs for hours on end just carrying on and having a good time.  And we would have thought that all of that activity would have made her sleepy but she was pretty nap free all day and continued to entertain this afternoon when Mike took her to the audiologist for new hearing aid molds (she outgrew the old ones).  She has been such an absolute joy lately - tons of energy, smiles, noise, etc - and she just seems to be feeling really good and it makes us really happy to see her this way.  Next week she goes back to the cardiologist and she will have an echocardiogram and we will find out if her medicine is still working for her or if the pressure has started to go back up in her valve.

As for the rest of us.  I made THE best burgers on the grill today.  And I've been bragging.  Admittedly - I am not much of a cook on the grill as I am easily distracted and the things I put out there tend to end up resembling hockey pucks - but these burgers were the best.  I think it pained Mike a little admit it.

Anyway - since I am still sans camera cord, I've taken this opportunity to go back through my old pictures so I can share a few with you.

For those of you who already know about Nate's disregard for clothing, here are a few cute ones:

I've had other picture-less posts before - but not when I've had a camera full of great pictures.  I've lost my camera's PC interface cord.  I figured it out a couple of days ago (hence the vintage pictures of Nate) but I was hoping it would turn up by now.  It hasn't.  And so it looks like I am going to have to buy one - and my camera is quite old - so I hope its not too hard to find one.  Its probably hanging out with my missing iPod shuffle and missing eye cream (yes - eye cream).

Saturday I ran in the Children's Memorial Hospital second annual Race for the Kids which benefits the hospital.  It was a 5K run/walk and the first 5K I've run since before I got pregnant with Finley.  I was just hoping to finish it given that I've only been running again for a month or two at most averaging 2 times per week.  The good news - I finished.  I averaged about a 12 minute mile but there were plenty of other people in the back of the crowd with me and it was a lot of fun - we ran on the gorgeous lakefront path and next year I hope to have a team in honor of my beautiful princess.  Here's the nerdy part.  I found myself tearing up a couple of times before the race.  First - I had lined up at the start behind several people wearing t-shirts with a picture of a beautiful little boy on the back and they read, "Caleb Jacob Tokarski 4/6/2006 - 4/12/2010"  He was Nate's age.  I started crying.  Then they had a special guest kicking off the race.  He was an 11 year old cancer survivor.  I started to cry.  I was looking around the crowd to see if there were any others like me.  There weren't (at least that I could see - haha).  That is when I decided I wanted to have a team.  Finley deserves a team.  And so next year - she shall have a team!!

Saturday night was equally as special - Finley had her first official outing.  A lot of our friends and family know this - prior to Finley's heart repair surgery - we didn't really bring her out of the house. Not to the store, not to friends/family's house.  The only place we EVER took Finley was to her clinic appointments or to the hospital.  You see,  Finley came home from the hospital at the start of cold and flu season (November).  We wanted to keep her as healthy as possible leading up to her surgery.  And so as crazy as it was - we never took her out.  We didn't want to take the chance that she'd get sick because we weren't certain how her little body would handle it.  And in spite of never taking her out - she came down with three colds - all three required trips to the ER and two resulted in hospitalizations.  Unfortunately as vigilant as we were trying not to expose her to anything, the reality is that Nate goes to daycare and is exposed to a ton of junk there and she has 5-7 therapy sessions a week - as adamant as we are about hand washing and using sanitizer - it doesn't prevent everything.  So anyway - while Finley has had a couple of brief trips to the store and such since she's been home - this was her first true outing.  We went up to Grayslake (our old stomping ground) to visit Mike and Susie Rowan and their son (and Nate's friend) Quinn.  We put Finley's mats out on the patio and she rolled around with the warm late afternoon sun shining on her and we sat in their lovely backyard and enjoyed the evening watching the kids play.  We enjoyed ourselves as much as the kids did and the smile never came off of Finley's face!

And so Father's Day began the same way my evening ended last night.  Pretty much as soon as we walked in the door last night - I got a sharp shooting pain on the left side of my head and it was quite literally one of the worst, if not THE worst headache I had ever had.  I even skipped pumping, took two Tylenol PM and went straight to bed.  I woke up to do Finley's feed several hours later at 4 am and NONE of the pain had subsided.  It was crazy.  When I woke up this morning, it was slightly better, but I just felt completely exhausted.  Like barely functioning exhausted.  So as soon as Mike came home from the gym - he sent me upstairs to rest.  I slept for an hour, tried to get up, and then ended up going back to sleep for two more hours.  Fortunately, while I didn't end up getting up until after 1, we spent the day together as a family and for dinner I made a new Crunchy French Toast recipe (that we were supposed to have for breakfast) and then later this evening we celebrated Father's Day with the cake that Nate picked out that said "My Dad is a Super Hero" and we sang Happy Birthday.  No.  Its not Mike's birthday but Nate thinks that every cake is a birthday cake and that eating cake = singing Happy Birthday.  Gotta love it. Who doesn't love a special rendition of Happy Birthday every now and again?

And so I've decided that this post won't be a picture-less post after all.   In honor of Father's Day and in celebration of Mike who is one of the most amazing dads of all time - one of my favorite pictures of all time.  Happy Father's Day!

Today I learned that in spite of all well meaning intentions, you shouldn't try to contest a ticket issues for talking on your cell phone in the City of Chicago.  No one cares WHY you were talking on your cell phone (Finley was in the hospital).  Just pay your $100 fine and $40 court fees and be on your way thankyouverymuch.  While I would have financially been better off had I not gone to court, it was the principle.

Vintage Dr. Nate

Finley has had a great a week and her therapists have all been very impressed with her progress.  She has been super active, and even more happy than normal (if that is possible).

Yesterday Nate got to stay home from school because Grammy came over and so Nate got to spend the day playing with Finley and his Grammy.  At one point I was on a conference call and I heard him tell his Grammy that "He was SO happy to be staying home today!".

Finley loves Sophie

I did have one pleasant surprise today.  The Baxter Foundation matching donation came through for my Charge It for Charge Fundraiser!  $665!  That brings out total fund raising up to over $5500!  And we're back in third place baby!  And, its definitely not too late to donate - or just visit our personal page and learn more about CHARGE Syndrome - click here .

Right now I am doing one of my favorite things - watching and listening to Nate play with Finley.  Our conversation went a little something like this:

Me: "Nate did you see Finley's new tooth?"
Nate: "YEAH!  She's growing up!"
Me: "She IS growing up Nate!"
Nate: "She's going to have wokkoli, then noodles, then mashed potatoes then birthday cake!"

Speaking of growing up....

Well - our weekend officially begun tonight (although I have to take a conference call in the morning).  I am celebrating by having a nice, big glass of wine.  Or ask Nate calls it "dada juice".  And he said, "Are you drinking dada juice?"  I said, "No, I am drinking MAMA juice." He said, "Your breath smells like mama juice!  You are going to need to take a shower and wash your teeth!"  Gladly Nate.  Just as soon as I am done : o ).

Its interesting - the way people approach the topic of Finley.  When she was first born and we were really in the thick of finding out about everything - people just wanted to tell us they were sorry.  And to be honest, that is about the last thing you want to hear.  While we understand the sentiments are coming from a good place, you don't really want someone to feel sorry for you.  Nor do you want yo hear that people feel sorry for your child.  Admittedly, Mike and I DO feel sorry for Finley - because of what she's been through medically.  And its okay for you to feel sorry for her - but please don't tell us that.  It really is fine to say nothing at all.

I had an interesting conversation with the pharmacist at Walgreens yesterday and I think he could tell based on the instructions on the bottle of Bactrim that I was picking up that my child had some special needs (perhaps the words "administer through g-tube was the give away) but as he tried to give me some pointers about the medication (while he was looking at the bottle) I could tell he was struggling a bit.  He started to say, "She should drink, um, get extra fluids while getting this medicine"  to which I replied, "she takes everything via g-tube" and he started to try to say it a different way and I said, "well, she is on a continuous feed 24 hours a day so I think she will be okay" and he just laughed uncomfortably and said "oh that will be fine then".  But it was what he said next that touched me.  He just said, "Taking it one day at a time huh?" And I smiled and said yeah, but she's doing awesome...." And he continued to ask a few more questions, I could just tell he was trying not to pry too much but at the same time offer support and yet show genuine interest and I left Walgreens feeling happy to have had the opportunity to talk to that complete stranger about Finley and I felt so happy that he asked about her.  I had someone tell me recently that they hope I knew they think about our family and Finley all of the time but that she just wasn't sure if it was something I wanted to talk about.  My response - OF COURSE I want to talk about Finley!  My friends and family know this by now, our nurses at the hospital, etc.  Honestly though - I will talk about Finley to whomever will listen.  And to the above rambling, its NOT because I want anyone to feel sorry for us for her, etc. - its because I want people to know what an inspiration our little girl is. How strong and amazing she is and most of all that she is quite literally the happiest little baby in the world.  Our lives have undoubtedly changed over the last 10 months, but I do believe things happen for a reason and when we started on this journey with Finley, one thing I knew from the beginning was that she was going to make us better people and she was going to touch the lives of every person who knows her.  The magnitude to which she's done that already in these 10 short months is tremendous.  So what I am trying to say here is don't be afraid - don't be afraid to ask about Finley, about CHARGE Syndrome, etc. because we welcome the opportunity to talk about her and to help others who might not know what its like to have a special needs child, or know someone with CHARGE Syndrome, etc.  Our hope is that Finley will inspire others as she has done us.

We were just watching The Backyardigans last night and I was singing, "Nate loves being a princess..." (as a joke of course) to which he retorted, "NO! I am NOT a princess!  Only goohls are princesses.  Hear that?"

Also overheard - Nate bent over his sister when we got home last night saying, "You are such a pretty goohl, yes you are!"  Over and over again.  I seriously get the most joy of just eavesdropping on Nate - between the things I overhearing him talking to Finley about, and the things he says when he is playing with his toys - it is one of my most favorite things ever!  Just like listening to the kids in their crib over the monitor has always been one of my favorite things too (in fact I am listening to Finley now).

Sandals? Check.  Flashlight? Check?  Jacket?  Check. Pants?  Ummm, This is Nate on his way outside to take Rosey for a walk with Mike.

The weekend was good - not as productive as I'd hope - but I did get the light bulbs changed!  And I tried a new recipe on Saturday!  I also squeezed in a couple of runs because I have the Children's Memorial Race for the Kids this weekend (its not too late to sign up ).



Finley had a great weekend and has been very happy and energetic and in spite of her heart surgery, I wasn't able to keep her off her tummy this weekend.

Technically at this point it is okay for her to be on her tummy but we've been cautious with her and had been trying to prevent up until the 4 week mark (which was last Tuesday).  Finally this weekend though she said the heck with it and she started turning herself on to her tummy - I would turn her back to her back - and two seconds later she'd be on her tummy again.  So then I just let her go.  She spent the better part of the day on Sunday on her tummy!

Finley fell asleep during 'pirate time' and decided she didn't need her hearing aid in.

And so I know many of you are wondering how the swimming lessons went on Sunday.  Well, as Mike and I sort of figured, they didn't.  Mike wore his swim trunks just in case Nate wouldn't get in the water and so Mike got in to try to coax him in and Nate refused.  Mind you - these aren't true swimming lessons - Water Scouts is held in the zero depth pool at Olympic Park and there is a water slide and all of this fun stuff - intended to get kids comfortable in the water.  You'd think that kids would have a blast with that right?  Not our little Natey.  Oh well, we will try again this weekend!

And also speaking of kids, Mike's sister Andrea and her husband David are expecting this first child, a boy, and she is due this weekend!  And a huge congratulations to one of our favorite nurses at the hospital (who shall remain nameless for now because I don't know if its still a secret-you know who you are : o ) who is expecting her first child in late December/early January!

(P.S.  Sorry the format of this post is all over the board - that is what I get for monkeying around with the placement of these pictures!)

Its been a couple of days since our last post - that is primarily because Finley came down with a tummy bug overnight on Thursday so I was up all night with her vomiting.  She started at midnight and was pretty much non-stop until 4 when she took a little nap and then woke again at 5:30am and vomited again.  Normally, all of this vomiting would have been bad news as previously had it been virtually impossible to keep Finley's blood sugar up if she vomited - even just one time.  This time, we had quite the opposite problem - he blood sugars were too high. Normal range is 70-110 - hers got as high as 180 - which is pretty much off the charts for Finley!  We aren't used to HIGH blood sugars in this house - in fact, I had tested Finley before I went to bed on Thursday night and she was 165.  I turned her pump off for 15 mins and retested her and she'd gone done to 143 - which, since she was sleeping I figured was okay.  So when she woke up sick, I was unsure, since we have no experience with HIGH sugars - if the fact that her blood sugar was high was what was causing her to be sick.  It was sort of funny because when you have a child who is as medically complex as Finley is - you automatically think its got to be attributed to one of the other problems, a complications or something - the thought never really entered my mind that she might have genuinely caught a little tummy bug.  I am still not totally convinced that is what it was - but all signs at the moment are pointing in that direction as she had perked up by the afternoon yesterday and is as good as can be this morning.  So in case you are keeping score - this tummy bug was 'normal' thing number two for Finley this week (first was the tooth).  It sure would be great if we are getting to the point with this journey of ours that we are just having 'normal' parenting moments for a while!  (As a side note, I will say though, I did enjoy the fact that administering pedialyte to a child with a g-tube is MUCH easier than trying to get a child to take it orally!)

We had a nice visit from my mom and my two beautiful nieces yesterday.  They were kind enough to come and entertain Nate because we had an endocrine appointment at 10 am. The last endocrine appt I brought Nate to - lets just say he wasn't on his best behavior and his antics included taking off his shoes and denouncing the snack that the nurse was kind enough to bring for him (he was complaining he was hungry and thirsty and when the nurse brought him animal cookies and juice he said , "BLAH!  I don't like THOSE cookies."  Given all of the craziness in our lives - I hadn't seen the girls in a while (which I hope will begin to change soon!) and when I came down the stairs and saw Gabi standing there - I had to do a double take because she looked exactly like my sister (Tammy).  I mean, she has always been a little clone of Tammy but even more so now - she and her sister Kassidy are just growing so fast.  Gabi was like a little mother hen with Finley and stayed by her side all day long, playing with her, etc - it was adorable and I think Gabi certainly had a future in babysitting!

Nate was so thrilled to have the girls here to play with - he was so wound up, I think he was actually scaring Kassi a bit.  He was up in her face yelling "BOO" or saying, "You can't get me!" and trying to get her to chase him.  It was a lot of fun.  Our endocrine visit went well - the doctor said that Finley's high blood sugars overnight could have been an insulin response to her being sick - but also attributed to the fact that her hyperinsulinemia seems to be correcting itself post surgery (like we hoped it would).  As I previously mentioned, a normal range is 70-110 - we had previously struggled to keep Finley in that range and the only way we could do it was with adding polycose to her feeds.  We had previously been adding 1 tsp per ounce and yesterday we cut that back to just under 1/2 tesp per ounce and we increased her rate from 30 ml/hr to 35 ml/hr to account for the calorie loss.  So far she is doing great!

And so this weekend I think we are going to focus on getting some miscellaneous things done around the house that have been bugging me for a while - like touching up the spots on the ceiling in my bedroom that I painted - like two months ago.  Or changing out those light bulbs in the can lights in the den (the thought of lugging the ladder in the house is unappealing to me : o) I am also going to try to get Nate transitioned from the potty seat (which I know he doesn't need anymore) to using the regular toilet.  I think its time to nip this....
in the bud.  As much as this cracks us up every time he does it (which is why we've let it go on for so long) the final straw was Thursday when the guy from the medical supply company came to replace our pump. While the fact that Nate runs around the house in nothing but his underwear 24/7 is embarrassing enough, he was on his way out of the bathroom, carrying his potty seat, getting ready to set up shop in the den so he could watch what the guy was doing. Fortunately, that disaster was averted.  So, I think I am going to put his potty seats away before he wakes up this morning, come up with a clever excuse as to where they went, and see what happens.

And here are a couple of Finley's 10 month birthday pictures...

There were big things happening in the Roth household today.  My big girl celebrated her 10 month birthday (officially her un-birthday) with a brand new tooth!  Her brother on the other hand got his first tooth at 14 months! So, as you can imagine, this was a big deal for us as it came as a complete surprise!  (As a side note - we have been VERY lucky as far as teething is concerned - it never bothered Nate and apparently it doesn't bother Finley either!)  And as soon as word got out, every person that walked through the door this afternoon was trying to pry her little lips open to get a glimpse of that pearly white!  Gigi (Finley's caregiver) texted me on my way home from my client meeting.  Got a tooth???  I walked in the door, washed my hands and proceeded to get my my finger in there to gather the proof myself.  Yep.  There was a tooth in there.  Amazing.  And as hard as Mike was trying to peek in Finley's mouth at that tooth this evening - she wasn't letting him in.  And Mike had an interesting comment that made me smile.  He said her new tooth was exciting because it was nice to finally have something 'normal' happen to her.

Another reason it was a special day today - it was Nate's graduation at school (Lynne - we missed the Gapsis family!).  Grammy joined me at school for Nate's program, although we knew exactly what was going to go down.  As soon as Nate saw us, he would run over to us and refuse to participate in the program.  Check and check.  So we basically went to school this afternoon to watch his class perform, while Nate hid behind me.  Good thing I brought my camera - I didn't get a SINGLE picture.  Oh well.

We also had a special visitor today.  Our respite volunteer, Sylvia, came by to see Finley this evening.  For those of you who are wondering what Sylvia does as a respite volunteer - she is this wonderful blessing that we came to know through Clearbrook's "Take a Break" program.  Sylvia comes to our house once a week for a few hours to allow us to - take a break (imagine that!).  Go to the movies, run errands, relax, you name it - she kindly spends time with and takes care of the kids so we can do some of the 'normal' things that we don't otherwise have time to do.  Sylvia is wonderful - and Finley and Nate love her and we can't say enough about how amazing we think it is that she gives of her time like this.  We were very happy to see Sylvia tonight after several weeks away during Finley's hospitalizations.  Nice to have you back Sylvia!

10 months old.  Our princess is 10 whole months old today.  How cliche it is of me to say time flies - but time sure flies doesn't it?  Ten short months ago...

Crazy isn't it?  Well you know what?  We are planning parties around here!  I've got two months to plan TWO fantastical birthday parties for my two sweethearts - Finley's birthday is August 8th - and my what a party THAT will be.  Nate's birthday is 13 days later on the 21st and while planning a combined party for the two of them would be the easy way to do things - you see - my little man didn't get a party last year because his baby sister had her first open heart surgery on his birthday and unfortunately, planning parties was about the farthest thing from our minds.

And so this year Nate has requested a Super Hero Party.  Or maybe its a Toy Story party.  Hopefully he'll figure it out soon.  Maybe we will have a Super Hero Toy Story party!  And for Finley - well we're just going to party.  Lots of reasons to celebrate so let the planning begin!

I am hard pressed to think of anything cuter than this.

I have been dying to post this.  I NEEDED everyone to share in this cuteness.  But of all days for Blogger to be down with "technical issues" is of course the day I wanted to world to see these cute little piggies.  This is what we did yesterday.  And this...

So there you have it. All is perfectly well in the Roth household at the moment.  And we like normal.

I do truly believe that everything happens for a reason.  And with Finley - we believe that more than ever.  But we've now had a couple situations in the last 9 (almost 10) months where we have found things out as a fluke.  Before Finley was discharged after her heart repair surgery - she was supposed to have a full echo done.  Well they were never able to complete hers because she threw such a fit while they were trying to do it.  But since those echos are just meant to be a final baseline and because she seemed fine and her saturations were good, etc - she still came home.  Rewind to last weekend in the ER.  We went in because Finley was super fussy and inconsolable, breathing heavy, sweating profusely, etc.   All of her labs checked out fine.  And when they came in to do an echo, she just happened to be asleep so the limited echo they had ordered turned in to a full blown echo since she slept through the whole thing.  That echo revealed this pressure (90% - 'alarming' level) in her pulmonary valve which, wasn't the reason we were there and I have just been wondering these last couple of days what might have happened and how we would have otherwise found this outside of something really terrible happening,

And as you now know from my brief post last night - Finley came home just in time for the weekend!  The doctor had sort of mentioned the possibility very nonchalantly on Thursday, but I hadn't seen her all day yesterday until one and I had really lost hope at that point that there was any chance in the world.  What a nice surprise!  Finley had a repeat echo yesterday afternoon and it showed that her pressure had gone down a bit further - from 50% to 45% now so the Propranolol has succeeded in cutting that pressure in half!  We just pray that it continues to work well for her.  We are so happy they took the chance to try it.  The funny thing that I have been marveling about since her re-admission is the sweating that had been plaguing her since her surgery - is gone - and it stopped abruptly the day she began taking the Propranolol.  I had mentioned this issue with the sweating to the nurse practitioners a couple of times before her previous discharge - and there can be lots of causes of sweating and they theorized that since she's just had a big change to her anatomy, that is probably what was causing it.  The interesting thing is that cardiac patients pre-surgery tend to sweat a lot because their heart is working extra hard for them.  I am pretty sure all of the doctors think I am nuts because I've not been able to get one of them to confirm my theory, but I just feel like this medicine had to have been the reason it stopped.  When I say she was sweaty - we are talking hair soaking sweating - all of the time.  One of the days before she went home the last time, I was holding her during a nap and when I put her back in her crib - the front of my sweater was wet - so much so that it looked like I spilled something on myself.  And this is how she was most of the time post op - her head was drenched with sweat and the rest of her body was cool and clammy.  I am happy to say - she is sweat free and to be honest - I think her lips and cheeks are a little rosier as well.  So its interesting to me as much as she seemed to be so much different after surgery - it turns out there were still issues we didn't even know were there.  Amazing (and extremely scary at the same time).  So now we wait and pray that this medicine continues to work for her...

Finley still continues to have some tummy issues because they have switched up her antibiotic for her kidney reflux and they've started a new one for the c. difficile. I had been pushing for the previous two days to start her on a probiotic.  This is something we used for Nate when he was having tons of ear infections and the antibiotics were wreaking havoc on his stomach - and I felt like they really worked.  Probiotics aren't something the hospital uses a ton, but the nurses had seen good results in the limited times they used them so they helped me to stay on top of the doctors until they got some for Finley.  The probiotic we are using, Culturelle, is over-the-counter but I just wasn't sure if I could put it in Finley's g-tube (for fear of clogging it) or not.  I am hopeful that this will help not only make her tummy feel better in the short term but also help beef up her immunity in the long term.

I had to take this picture because for some reason, the green lead is ALWAYS her favorite and she always takes it off.  Its also the only one where, if you take if off, none of the others work.  The green lead can frequently be found in Finley's mouth.

While I had been hopeful that Finley would come home yesterday, I have learned my lesson never to say anything to Nate unless I know for sure.  He's been taking it pretty hard when she gets hospitalized and so I really wanted to surprised him yesterday when I picked him up from Grammy's by bringing a special little friend along.  And so Finley and I decided to wait out the rush hour traffic and left the hospital around 6 and stopped at Grammy's on the way home to get Nate.  The funny thing was Nate wasn't at all interested in seeing me - he wanted to stay at Grammy's!!!  That was until he saw who was in the car and then he was super excited and immediately began "sharing" his toys with Finley.  He is just such a sweetheart and loves her so much.  Watching them interact is one of the best things in the world.

Just squeezing in one more nap before I go home.  I am loving this little nest my nurse made for me.

This morning, I am just getting ready to start Finley's spa day.  We do this every time she gets discharged because girlfriend needs a little TLC!  We start by cutting her nails and then I give her a nice long bath, get all of the adhesive off of her skin (from the tape and bandages, etc) and then I rub her down with lots of good lotion and I blow her hair dry for her (I know this sounds crazy but for those who have seen Finley even remotely recently - this kid has TONS of hair and it takes forever to dry on its own).  And so now I am off to pamper my princess!

Have a wonderful weekend!

 Stay tuned, will post more tomorrow.....

Sorry for the delayed update - Blogger wasn't keen on me logging in last night - I tried several times and I couldn't create a post.  Lots has happened since then.

The medication they started Finley on yesterday is called Propanolol.  Its a beta blocker intended to lower the pressure around her pulmonary valve.  Its not typically used post repair - they do however use it frequently in un-repaired kids who have pulmonary stenosis and it works quite well.  They weren't sure if it'd work for Finley - but so far it has!  In the ER on Sunday the pressure gradient around her heart was 90% - which is pretty much the "alarming" level (the doctors called it something else - equally as scary : o ).  After three doses, her pressure was down to 50% - which is "moderate" (normal is 10-20%).  The doctors ultimately hope that she can remain on this medication and it will continue to work for her for several months which will allow her to grow, and it will allow her heart to grow and hopefully negate the need for another surgery.  At the very least, the purpose is to carry her forward at least several weeks so she can at least heal from the last surgery.  Admittedly, its tough to be optimistic on this.  Finley always seems to choose the road less traveled.  The other thing that quite frankly sucks the most is that this is happening at all.  Imagine gearing up for something for 9 months.  The biggest, most stressful moment of your life - a life changing event that you wanted more than anything in the world to go right.  A day that you feared the most but could not wait to come for when it was past, it would be the first day of the rest of your child's life.  And then it goes wrong.  An essentially, we might be back to square one.  This wasn't supposed to happen.  We had always just assumed that Finley would have her repair surgery and that would be it.  Huge hurdle cleared.  Behind us.  It sucks.  And as much as I try to always be positive, its been hard this week.

So, the good news about the heart medication working came with some bad too (seems to always happen that way).  In an effort to find out what was causing Finley's vomiting and diarrhea that had been going on since Sunday (which I think was attributed to her antibiotic) they took a stool sample that ended up testing positive for C. difficile.  Its basically a nasty stomach bug that tends to occur in people who have been in the hospital and who have been on antibiotics (check and check).  The trouble is, in children under 1, the test gets a lot of false positives because c.difficile bacteria are normally occurring in a lot of babies.  In order to be safe, they stopped Finley's feeds for a while last night in to today, did another abdominal xray (which came back normal) and they just monitored her for a while to see if she continued to have diarrhea.  She actually had a great day today and for the first time since Saturday, didn't have an incredibly fussy period that preceded a big poop and then some vomit.  But, I also had them stop the offending antibiotic today and they discontinued another medication - I still think that was the culprit.  In any event, what all of this simply means is that they are going to start her on yet another antibiotic to treat the
the c. difficile.  And this, as you can imagine, is the least of our worries, but yet another annoying thing that Finley has to endure.

I did have one small victory at the hospital today and that was that I successfully negotiated the cancellation of a CT scan that they wanted to do on Finley.  This would have entailed going under anesthesia again and being intubated (not to mention the exposure to radiation)- which would have meant recovery in the PICU and potential re-irritation of her airway - the one thing that ISN'T a concern right at this moment.  I was adamant about the fact that I really didn't want Finley to have to go through this as it not only meant potentially complicating things further, but it undoubtedly meant a longer hospital stay - and at this point - I can't get her through that door quick enough. And thus the good news came that her cardiologist agreed to let it pass for this admission and so Finley will get a little break.

I have to admit, when I got to the hospital this morning, I wasn't in the greatest of spirits.  I was tired and to be honest felt a little defeated.  And then I walked in to room 523 - and there was my little girl - a smile wide across her face - kicking her feet in unison - and clapping her hands.  Suddenly, everything seemed alright.

Well, after 7 days at home (and one quick visit to the hospital on Sunday) Finley was re-admitted this evening.  Today Mike took her to two regularly scheduled appointments - a cardiac surgery follow up and an appointment to have the voiding cystourethragram (for her kidneys).  After consulting with Finley's cardiac surgeons, the decision was made to admit her to try a medication that is supposed to alleviate the pressure in her heart.  The fact that Finley has been vomiting a little and has had some diarrhea and has been significantly fussy (very un-Finley like) she earned herself an isolation room.  Unfortunately, because Mike is still at the hospital with her - I don't have a lot of other details to share - other than to say we are hoping that whatever this "bug" is that she has - works it way out soon and that this medication they are started turns out to be magical.