Wednesday, December 28, 2011

Hurry Up and Wait

I discovered over the many visits to the hospital that time continues to pass you by and you loose track of how many days you've stayed, when things happen, how long something takes, and in reality - you loose track of "Real Life".
Life is just different, there's no explanation.

Aine is however doing better and better. The suctioning has decreased and she is in the process of being weaned off of oxygen. She is still sleeping all the time, but as long as she is awake at times & alert when she is awake I'm not going to complain.

They are discussing sending her to the floor today and that it will take some time (I'm not sure what this "sometime" is) to get her off of oxygen. Since we don't have an at home nurse, we will have to hang out at the hospital until she is off oxygen :( I've requested that they start the process of getting us a nurse, but only time will tell. Patience - NOT my strong point.

Tuesday, December 27, 2011

Virus, Virus - Who'ss got the Virus???

Aine has the Virus :(
Well, we have a WONDERFUL Christmas with family, overstuffed ourselves, overstimultated the kids, laughed as hard as you can laugh, had some jaw dropping expeirienced and are now waiting "patiently" for Aine to be released from the hospital.
She started to get really irrated Sunday night and by the time home nurse got to the door she was kinda grey in color. Her stats weren't picking up the way we would want them to & her nose started to pick up the old time purple color.
Needless to say - the cardiologist was called (silly to think about now, but hey - you end up using all your options) and we headed off to the ED for evaluation.
She was destating as we expected - so she was put onto oxygen, labs were drawn, IV was placed, Echo & EKG were performed.
Her oxygen saturation started to recover as we hoped that it would, IV was a tough place (which as you know is pretty common for Baby Aine), Echo showed some toughing of the right ventricle (Uggg - let's hope this is just from the retained fluid), EKG from what I know looks good & Lasix was restarted to start drawing the retained fluid. (She gained 0.5 KG in 3 days)

Liam's having fun with his boys & moms coming to visit while we are "patiently" waiting for Aine to continue to get better.

It sounds positive at this time - what I mean by that is it sounds like she hit rock bottom and is on the way back up from there. YEAH BABY AINE!!!!

To leave you with a Funny note (sorry no pictures - I left the house without my camera so I'll have to add them when I get home). But...

On Christmas, Mr. Liam said that he was ready to go to bed. I went in to see how he was doing & he asked that Shawn go in to tuck him in.
Shawn went in and asked him if he would like some Christmas Pie & he said no, but that he wanted to say Good Night to everyone.
Once Liam saw the Pie he wanted some - so Shawn put him in his chair.
To our surprise Liam said "Doesn't anyone eat cake anymore?"

Tuesday, December 20, 2011

It's ALMOST TIME!

Well,

During our online absence we have been very busy.
I took Aine to her first "Clinic". This is a day of meeting with specialist (ALL DAY). It was a long day, but pretty interesting. I learned a lot & was able to get a lot done without going anywhere (once we were in our room that is).
As normal though - one appointment turned into too many to count.
First - the cardiologist is Very happy with the way that she is growing and looking. She is very happy with the PINK color that Aine now is. We did some adjustments on her meds and scheduled another big appointment (EKG, ECHO, and pre-post op appointment).
Second - The ENT. We have been concerned that Aine is not hearing as well as we would like & we don't want to affect her in the long run, so... we took full advantage of the clinic and had everything done. Well.. Sadly... She failed her hearing test. Her Tympanic Membrane (TM) was "flat Lined" which means that it is stiff - probably from fluid behind membrane (I guess they can tell if there probably fluid or a hole in the TM by the way the test results read out). They did another test on her for good measure and as expected it was also flatlined. Since we have a family history fulll of tubes; Aine will be going in for another surgery - this time a day surgery which will include A) hooking her up to some cool device that will verify she has Hearing activity running from her inner ear to her brain. B) The ENT will place tubes C) They will do an X-ray of her skull.
They are planning on doing an x-ray of her skull to make sure that everything looks good and the plates are not fusing together too quickly. Since this is a test that needs to be done while she is under - they are hoping to get everything done in one shot.
The dentist is suprised that she has teeth, which I find silly. Liam started teething at 3 months (for those that don't know - the pediatrician tried to stamp Liam as colicky because "kids don't get teeth at 3 month" We left that office and started our adventure of finding our current Ped). So.. That being said - Aine will need to start seeing the dentist every 6 months.
Speech is very happy with how Aine is progressing and that she is accepting TINY amounts of food. She is hoping that she will do even better once she has the tubes placed.

Liam is Doing GREAT! He is growing by leaps and bounds and seems to be enjoying the last months of being 2. He continues to ask if he can have Thomas at his birthday - so I may just have to enlist a certain person Now so that they will be able to top the Thomas Cake from last year :)

Shawn's back is starting to get better. The Dr made some tweaks to "the hole" and it doesn't seem to hurt as much as it did previously. It is looking and healing well, but I will not be sad when it is healed.

Myself - What can I say? I'm done with our Christmas shopping - just waiting for a few items to get here. I'm going to miss seeing those that we will not see this year, but they will be in our hearts and thoughts. I got a 2011 calendar and can't believe how fast it is filling up.

We hope that everyone is doing as well as we are and are safe over these holiday weeks.

Liam with Santa






Thursday, December 8, 2011

Prayers!

I would like to send some prayers out to a few people.

First Jules - You will beat this cancer (Lymph node) as you have beaten the previous ones. Keep your head high & spirits up! We're all here for you!

Second - Dear Sweet Little Abby - May all your tests continue to come back with uplifting results - You are a strong little girl & we all know it - but your heart knows it the most!

Third - Charles - Stray strong and have a quick recovery - you wll be out of the hospital before you know it!

Fourth - Mamma Moss - Keep up the GREAT fight - you can beat it!!!

Thursday Already???

It's alway good when the week goes fast because then we have the weekend to spend with Shawn, but it is also sad when the week goes fast because the kids grow up just as fast.
Shawn ended up going to the Dr for the incision on his back to find out that he had a hematoma :( so now he has a nice open spot on his back where they needed to drain it. We'll see what the Dr. has to say on Monday.
Aine is doing well, she seems to be getting stronger as the days go on & is starting to get on a schedule :) Yeah!!!
Liam on the other hand would prefer to skip naps and stay up all night (that is if he was able to do it :) Silly Little Man.

At least life in my house will never be uneventful & full of surprises!

Wednesday, December 7, 2011

Some Well Deserved Photos!

Before we get started - I just want to let you know that there are some graffic healing photos. I will put them at the end & so if you don't want to look at them you don't have to.

Have fun!

Getting used to the goggles he will be using during Swimming Lessons - SO proud of my little man!


I Love my Food!


Little Miss Mis-MATCH.
I love "pulling" a small detail out of the main part of their outfits & matching the rest of their outfit to that.


My Kitty Bunny Rabbit - Let me Beep your nose!


Oh Baby Aine - I Lub You!


Poor Two Pup! Always getting the short end of the stick!


---------------------------- GRAFFIC PICTURES ---------------------------




Aine - 4 1/2 weeks post surgery


Shawn 1 1/2 weeks post surgery

Tuesday, December 6, 2011

8 months & Another Year!

It's been a pretty good week soo far.
Aine turned 8 months on the 4th & the next day I got to become another year younger ;) Liam is feeling better & Aine is getting up the boogers that have been sitting in her throat.

Aine's chest is healing well - right now there is one spot that looks to have a pimple on it and another spot that is superficially open. We have to postpone any planned tummy time until these spots are resolved (reduce chance of infection).
We are planning on visiting Santa soon - so now I get to figure out what they are going to wear - I'm soo excited! They both look soo cute dressed up.

I also have some other wild hairs brewing & am wondering how I can't make the time to do something about it. As I was reading a friends blog (The Middlest Sister) I realized that we really don't have any year round family traditions - maybe it's time to start????

Well.... It's starting to snow big flakes & it's garbage dump day (garbage truck day) - so we've gotta start counting!

Happy Happy December everyone!

Thursday, December 1, 2011

Schedules

Even though I can probably be considered a Procrastinator :) LOL
I still really like my kids to be on a schedule - they thrive so well when they are and are OH soo crabby when they are not. And as you can guess, crabby kids makes for a crabby mommy - & YES as the saying goes - an unhappy mommy makes for an unhappy household.
Liam enjoys pushing the bedtime buttons, so he hasn't been going to bed before 11pm on a nightly basis - then is crabby & won't come out of his room until 10-11am. Now this is ok if you have nothing going on in the morning, but we so happen to have an EARLY appointment so... Mr. Liam must wake up! He was "playing around" again last night and spilt all the water that was in his room, so he started to scream (achieving a goal of waking his sister), waking his dad & allowing me the pleasure of cleaning up another mess prior to shutting the house down for the night.
When I walked into his room he was happily sitting up & ready to "wake up" to which I informed him that he Must close his eyes & he Must fall asleep because I will wake him in the morning & if he is crabby he will loose TV for the week & to top it off I even informed him he would loose his Stinky & his pluggy for the entire week also. I've Never seen this little guys eyes snap shut soo quickly.
I needed to go into the room again to get some stuff for Aine & he was "sleeping" - which made me turn around and quickly walk out because I did everything i could to Not bust out into laughter.
Within 5 minutes after going into his room the second time he was Fast asleep - let's hope he's not crabby today & Aine passes her exams.