Rainy Weekend

We had an exceptionally rainy weekend here.  Josh is leaving for a work trip to DC on Monday morning and will be out of town on his 36th birthday.  We had a mini-celebration on Saturday complete with trick candles on the cake (Josh is sadly lacking in a sense of humor when it comes to trick candles).  He'll be missed on his birthday this year, but it's only fitting to miss his own birthday since he was traveling for my 34th birthday.  

The girls tried to stay busy this weekend.  Zoey had a major fit at Target which cut our shopping trip short yesterday.  I know people we staring, some with understanding looks on their faces.  But come on people, have you never seen a 4-year old have a melt down before?  Surely this is nothing new to suburbia.  I have always had sympathy for those moms, of which I now hole a permanent membership (or so it seems some days).  I just want to say to these young people staring ... just wait, your day will come too.  No one gets a perfect child, and if by some miracle they do, surely there are drugs involved.

Hopefully this week will being some nicer weather so that we can maybe get some fresh air into our lungs, and maybe if we're really lucky, tire out the 4-year old!

22q at the Zoo! Worldwide Awareness Day

Check out the following link for info on 22q at the Zoo!  Worldwide Awareness Day on May 22, 2011 from 11:00 - 1:00.  Zoo's around the country and the world are partaking in a day to bring awareness of 22q11 Deletion Syndrome.

http://22q.org/22q_zoo.php

We're looking forward to meeting other families and hopefully making some connections.

3-22-11 Laughing

I posted so quickly yesterday that I forgot to mention that Riley is laughing!!! She loves to laugh at her sister bouncing and also Nana found a tickle spot next to her surgery scar and I have found ones under her chin and at the top of her legs. It is absolutely one of the greatest sounds I have ever heard to hear her laugh. She is also starting to recognize us and smile when having not seen us for a while - it literally brings the greatest joy to me to see her smile and hear her laugh. For all of the issues that she and we have been through, she still can laugh and knowing that makes most of it worthwhile. So many never are able to hear their children laugh and those are the people that I am saddest for. Today though, I cried at hearing my youngest daughter giggle at my tickling her - it sounds ridiculous, but considering where we have come with her, it was the only way I knew how to celebrate.

3-21-11 Our littlest one laughing

This has become one of our most favorite past times as Zoey has figured out that Riley loves to see her bounce and to bounce with her. It is wonderful to see how much Riley is noticing the world around her. I know that it is going to be a long long journey with our little flower, but moments like this make it all worthwhile.

3-20-11 Zoey, Look out World Cup 2028!!!

So Zoey had a couple of soccer games this weekend and while she is working on getting more involved in the flow of the game (she tends to run near the ball and the pack, but won't get in and scrap) - she did score her first goooooooaaaaaalllllllllll!!!!!! Additionally she played around 1/4 of the 2nd game in the goal and stopped 4 shots taken at her and is unscored upon in all the time that she has spent in goal. She seems to like it and is very good at being a goalie, throw-ins, and free kicks. I don't know if she has meant to, but she also has to lead the team in assists as she always ends up kicking it to a teammate. I am very proud of how well she has done as this is her first year and considering some of the other kids that I have seen out there - wandering the field as if they are a sheep who has been let loose from their pen or just tugging on either others or the fences during the game. I hope that she continues to enjoy it and do well.

Happy St. Patrick's Day!

Hope everyone has a great St. Patrick's Day today.  Be safe if you are planning on going out to celebrate, but have some fun, drink some green beer and enjoy!  We'll be having our annual corned beef & cabbage dinner with some yummy Irish soda bread (and surprise green cupcakes for the kids).  The Agueros' are coming over for dinner, as they do every year.  Sadly, this is the only time of year we get to eat our "Irish dinner" and this is probably one of Josh's least favorite meals.

Zoey's 1st Soccer Game

Zoey had her first soccer game today at Newtown Park.  Ironically we knew the coaches of the opposing team from our neighborhood.  The Sharks did awesome today, they played so well with one-another,  Hopefully the rest of the season goes as well

Riley's Scar

I am so pleased with how Riley's scar is looking post-op (as is her surgeon).  This is her badge of honor

Goal!

Zoey was the first (and only) person on her soccer team to score a goal during their practice game last Tuesday night.  She was so darn proud of herself, it was adorable.  Tomorrow is the big day, the 1st soccer game of the season.  We're hoping that she is as successful at scoring a goal tomorrow as she was at practice.  We have an 8:30 am game so hopefully it won't be too cold outside, but we'll be bundling up, just in case.  Go Sharks!

Tube Update

Luckily the surgeon's office was able to fit us in on Friday morning. we did have to see a different doctor, but that was no big deal.  Riley has granulated tissue, which evidently is a fairly common ailment for tube sites.  The doctor cortorized it and prescribed some steroid ointment for us to apply twice daily for the next week.  Hopefully that heals is us, because she is still oozing and bleeding there.  Overall Riley is doing amazingly well.  She has her follow up with the Cardiac surgeon tomorrow, so hopefully all goes well.

Zoey was a little disappointed this weekend because her soccer pictures were postponed due to the rain, but her first game is coming up on Saturday 3/12 (Go Sharks!).  She is absolutely loving playing soccer and I really think it helps to burn off some of that excess energy too!

G-Tube

So just when we think everything is going smooth as silk, we get a little hiccup.  In changing Riley's diaper tonight we noticed that the Mepilex which is a soft cloth thing that sticks to Riley's skin to collect any leakage was pretty yucky.  Well, underneath was even yuckier.  Josh & I ended up taking out the Mic-Key to really clean it good, well that's when we noticed the blood - actually it looked like a blood blister that had popped.  Needless to say, I was speed-dialing Dr. Wulkan's (our surgeon for the G-tube) office.  Dr. Clifton was on call and he actually called back with in 2 minutes.  He suspects that due to the fact that Riley was on bi-pass during her heart surgery, the blood may have thinned out and very likely caused a blister under the Mic-Key.  Dr. Clifton wants us to keep an eye on it and bring Riley into the clinic tomorrow for them to take a look at.  The upside is that he doesn't think this is urgent enough for us to go to the ER (Lord knows I am a little tired of that hospital), but he is concerned enough that they want to check her out.  Needless to say I will be calling the office by 8:30 when they first open and tell them they have to see me & my baby asap!

Home Again, Home Again Jiggedy-Jig!

Well, we did it!  Riley is officially home and I think she is pretty darned happy to be out of that hospital.  Currently she is "eating" her 3:00 meal, cooing and moving her arms around wildly.  I think she's pretty worn out, so I wouldn't be surprised if she conks out here soon.  I'm just thrilled to have her back where she belongs, and other than follow up visits, I hope never to be at Egleston again.  Here's hoping that's the case.

Today Could be the Day

Well Riley's chest X-Ray looks GREAT!  Much better than the previous ones, so it looks like today is going to be the day that we get to go home.  Granted, I probably won't believe it until we are in the car pulling away, but this is exciting news.  Prescriptions are being faxed to the pharmacy, and hopefully they are getting all their ducks in a row so that we can vamoose!

Oh, What a Night

So last night was a not so sleepy night.  Riley was waking up every hour or so, and getting quite fussy.  The only thing that would calm her down was when I would slide my arm under her shoulders and kind of hug her to me.  Then I would gently sway her until she fell back asleep.  Finally when the nurse came in around 3 am, we discussed giving her some Tylenol to help ease her fussiness, and that seemed to do the trick.  Right after that, Riley's respiratory therapist came in for her CPT, well the greatest news is that the therapist took Riley's cannula completely off.  Now you can see her gorgeous (albeit scratched up) face.  After all that commotion, Riley finally fell into a nice deep sleep.  Around 5 am, the nurse took Riley down for a chest X-Ray, and then the tech came to draw some blood.  Well have to see how things go now

Cranky, sleepy baby

I'd finally gotten Riley calmed and sleepy, when it was time for her respiratory treatment.  Unfortunately tonight it made her cranky instead of sleepy like normal.  The good thing is that Riley has been weaned back to 75 liters of O2. Right now she's kind of all over the place with her numbers, but I am hopeful that they will stay at or above 93 tonight.  Riley is so beyond tired right now, to the point where she can't actually get to sleep.  I keep picking her up and rocking her, but as soon as I put her down,Ms.Crankypants reemerges.

Take-Along Swing

We have the greatest thing in our hospital room right now; it's a take along swing, which is about the size of a bouncy seat.  I wish I'd known these things existed before.  To my pregnant friends, I highly recommend getting one of these.  It is lightweight and so portable, great for soothing fussy baby.  Thanks to this swing, Riley is conked out in her crib, hopefully having sweet dreams.

What a Welcome

When I got to the hospital this evening, Riley was not quite sleeping, not quite awake.  She opened her eyes and saw me and I got the BEST smile.  She was all chatty and smiley and just a joy to be around. 

I'll be taking the overnight shift tonight so that Josh can go home and actually get some sleep.  He left here around 3 pm so that he could take Zoey to her soccer practice.  Saturday is soccer picture day and she is so excited to have her 1st game on March 12th.  Zoey is an amazing athlete for a 4-year old and it is such a great outlet for all that energy that she keeps pent up in there.

Right now Riley is on 100 liters of O2, down from the 125 liters that she had been on.  Thank heavens her O2 numbers have been between 93 and 98.  Hopefully this is a good sign and this is the next step for us to bring her home.  I'm hoping for another good night ... keep your fingers crossed.

PostOp Day 5 11AM

We just got done taking our first food by mouth since the surgery - mmmmm apples. Riley did well with it, a little coughing, but that is normal. She started talking with me again which normally means she's enjoying it. We have a cardiologist reviewing her echo from this morning right now, so I will update as I know more. And before I posted we got to talk.

So Riley has a leak through/around her patched area. This is so minimal - the doctor explained it in the way that if the original 'hole' was 100 size, the patch got 97 and she has about 3 left. They don't envision it ever being something that would effect her and their are a lot of people that walk around with something like that which just never know it and it never effects. Additionally she has a regurgitation in her tricuspid valve which is right next to where the surgery took place. This happens in almost every patient who has this surgery and it doesn't worry them at all and she should be able to live with it as long as it doesn't get worse (of course this leads to the question of - if it happens to everyone, why don't they tell you beforehand that it is going to happen....for someone that likes to know what is going on, this can be phenomenally frustrating at times).

PostOp Day 5 8AM

Riley had a much better night last night, only waking up once. Her heart rate was down in the 140s-150s!!!! They did try to ween her off the oxygen and she just wans't having it as her O2 went down to 85-88 and it needs to be above 93. So more X-Rays and blood work this morning. No fever though after the one yesterday and we have had some more smiles. Riley woke up this morning talking with the nurses and babbiling at me. So hopefully she is getting back to feeling normal. I imagine that we will be here till at least tomorrow, but hopefully not beyond that.